The First Fabulous O-M-T People-Food Pairing Sweepstakes

Part of my initial navy flight training in Pensacola included a week of survival training in the wilderness of the Florida panhandle. We learned to forage for nuts and berries just like Ewel Gibbons, but at the end of the week, weren’t all that impressed with how many parts of that pine tree that were edible. Suffice it to say, we drank a lot of water purified with nasty-tasting iodine tablets and slept under the stars with empty stomachs. And all we talked about during that time? The very best food we would be having when we returned to civilization. Yeah, nothing like talking about the food you can’t have while you’re picking cactus spines out of the prickly pear fruit so you can actually have a small morsel of food. So, the very first thing we all did when we got back to NAS Pensacola was hit McDonald’s. True story. Pathetic.

Fast forward twenty years and it’s 3:00 am and I’m reminiscing the same sort of thing. Trust me, it won’t be a quick run to the golden arches when I slip the surly bonds of the VA Hospital! In fact, what struck me was that it’s not just the food, it was the experience. When I look back over my life, some of the greatest joys I’ve had with people have included breaking bread in exotic locales and the familiar alike.

I’ve had some incredible experiences that were literal pageants of food and the people I spent it with made it an amazing, memorable experience.  If you’ve ever attended a Christmas dinner in King Hall at the Naval Academy, that’s one such sensory overload. Another incredible over-the-top experience was at L’École Navale in Lanvéoc, France. An all-night gala of every possible kind of French tastiness known to mankind was the order of the evening and it ended at dawn with choreographed fireworks. A few years later, a group of us pilots and aircrewmen went ashore away from our duties off the coast of the former Yugoslavia for a liberty call in Istanbul. The six of us got to try more Turkish dishes in an authentic setting, wine flowing, and memories making for the low, low price of $3.7M Turkish Lira (about $40 US at the time). Not a one of us spoke a word of Turkish, but when we left, we were fluent in friendship.

Not everyone has the opportunities I have had as a naval officer, but every one of us has equally memorable times with friends, new and old, that paired with the right food, create what I consider “perfect moments.” A few of the most poignant ones that didn’t require international travel and intrigue that instantly brought a smile to my face and a grumble to my tummy:

Best steak I ever had – filet mignon oskar at McCormick & Schmick’s, Minneapolis with Brian
Best Sunday brunch – crab cakes Benedict at C’est La Vie, Laguna Beach, CA with Dassi
Best pasta ever – spaghetti a la carbonara at Broder’s Pasta Bar, Minneapolis with Heidi

You get the picture. What made these meals perfect was the pairing of the best food and the best of peoples. I’m not talking so much about going out to eat as much as I am about making memories. We make the memories and when you put the right food in there…well…it’s perfect.

So, my mind in going to these places in the wee hours of the morning was to make this an interactive project for us.  I’d like to create a perfect moment with you as a way of saying thank you for all you have done and continue to do to keep me in positive spirits through the long haul of my treatment.  The rules are simple.  I’m going to put out five basic categories for the ‘perfect moment’ people-food pairing and will choose the best in each category on the day I am discharged from the VA Hospital after my transplant. I will make arrangements to come to your location and we’ll make that perfect moment together. (Disclaimer – if said winning entry involves exotic travel, one of us has to either win the lottery or be already independently wealthy).

The idea behind this is not something you’d like to do as much as something you’ve done before and can vouch for it being simply perfect.  Neither is it about 'going out to eat.' I've been the guest of some of the finest cooks ever and the meal wasn't in a restaurant. This about no hassle for either of us and I also want to make it less of a bucket list kind of thing because if anything, I hope this will spur you to find perfect moments with the people in your lives as well.  For me, I just want to create some with you.

OK, here are my categories:

1 – The Eureka Moment.  We’ve all had our salad days when any money spent was too much, so we found the freebies, the cheap eats, the best kept secrets. Is it a food truck or ice cream that no one can touch? What’s the experience that makes it magical? Price limit on this one is $10.

2 – Ethnic. Have you ever stumbled upon some place that if you didn’t speak the language, you might be at the mercy of the owner? Yet, when you left, you were suddenly fluent. It doesn’t have to be ‘authentic,’ but again, we’re talking experience. 

3 – Sunday Brunch any time! Trying to get a table Sunday mornings is hell just about anywhere, but there’s a reason for that. We love our Sunday brunch. Where was it so worth it you were willing to wait because the whole experience was nothing short of transcendent?

4 – The Warm Blanket. I’m naming this category in honor my favorite med tech, Nikki. Comfort food is the name of the game here.

5 – Diabetic Coma. I don’t typically do desserts these days because they’re HUGE and have more calories in two teaspoons than my meal, but where would you go to have dessert on its own because it’s just that good.

So, describe for me your perfect pairing here. When I come to your town to take you to this place, where are we going and what are we doing? Be as descriptive as possible. Extra points for creativity because after all, this isn’t about best places to eat, fancy or stark, expensive or cheap; it’s about making perfect moments to look back on and setting the bar to keep making more. Please send your entries to me via email at todd_park@hotmail.com and include “Perfect Moment” in the subject line so I can keep track of it.  I’m absolutely serious about all this and am so looking forward to making a *lot* of perfect moments even if there are more than just these five. You can enter as many times and for as many categories as you want and if you have a perfect moment that doesn’t fit the description of one of these categories, send it in anyway. These are the ones that I just came up with during my nightly dance with lucidity.

For your viewing pleasure today, I present "Say" from the movie, The Bucket List, which was delightfully schmaltzy, but in view of today's making perfect moments, I think it's appropriate and I hope that during those perfect moments, you get to "say what you need to say."

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

What Fresh Hell?

I’ve pointed before that weekends here at the VA Hospital are really quiet.  The doctors still do their rounds, the nurses, medical techs, orderlies, and everyone else who makes this place hum are still busy doing their myriad chores to heal the likes of me, but the hallways are empty of the usual buzz and I see more of the colorful clothing of visitors over the starched white lab coats and scrubs. For whatever reason, I understand, that this is also inevitably the time that a more colorful patient may find his way here. Since it’s quiet out there, I hear it all: the dementia and disorientation, the edge of fear, the raspy voice of desperation. Yet the staff manages to keep smiling for me.

Despite having precious little sleep last night due to a constant barrage of infusions, transfusions, and vitals-checking, I feel better than I have in a week.  I ate solid food without feeling nauseous and I’m sitting away from the bed with the OK to take a walk outside my room. I’ll have to wear a mask, but I may even get to go – get this – without my IV pole! My buddy may have to hang back. Between that, a shower, brushing my teeth and clipping my nails, I feel downright human. Now, the guy next door…he clearly doesn’t feel human. It would be easy for me to be annoyed with the noise, to be put off by the disturbance while I’m just trying to rest or heal, and I dare say, every one of you, in my position, would feel totally justified in pushing the call button and saying, “What can we do to fix this, hmm?”

Now, this isn’t a problem of the veteran’s system. In fact, it tells me that there is a level of compassion that far exceeds what a commercial system could offer. His plaintive raspy, “Is there anybody out there? Please?” is grating, but the kind of hell he is going through far exceeds my discomfort. I don’t buy off into Dante’s version nor does the traditional evangelical model of hell make any sense at all, but without doubt, we’re capable of putting ourselves into hell on earth even when we’re not suffering. Let me say right now, this is not theological in nature, but I do use the word, ‘hell’ because it’s a place of torment, even if only in our minds.

I understand that these people sometimes make it to the acute medical ward when they should realistically go to a psych ward elsewhere because they clearly have issues that are not simply physiological. Then again, sometimes the wires in our heads are mis-routed by something physiological or chemical and we just don’t act like we should even though on the inside it feels like all cylinders are firing properly. If there’s anything I’ve learned over the past 16 days, we are a well-oiled, finely tuned machine that requires an amazing balancing act to keep functioning at tip-top level.  We’re pretty resilient and can put up with abuse, but at some point without the right maintenance, something breaks. As I’ve pointed out, any cancer is simply a breakdown of the immune system at some point. Mental health has a number of facets, but it is still, at its core, something that can usually be well-managed with some medication and sometimes some guidance to keep the adjustment in balance.  Better life through chemistry! Shoot, even leukemia comes down to that where chemistry (albeit rather toxic chemistry) saves the day.

Suffice it to say, after spending a couple of nights in the la-la land of incoherence, metaphysics isn’t far behind – you can discuss it, break it down into bite-sized components for dissection, and even understand it to some extent, but at its essence, it’s all something that distills down to one person’s opinion and understanding, regardless of how many common touch points there are. The good thing about these forays to incoherence is that, despite how truly awkward they are, there are moments of insight and lucidity that you bring back with you because your mind just doesn’t live in those places, by design. It’s in ‘safe mode’ and you find that from that safe place of blankets, ice cream, and tucking in, other things that we think are so important just aren’t. Be assured, I’m not going to start a religion based on my metaphysical musings, despite how really special I’m sure they would be.

OK, I’m not going to spring anything profound on you and remember, I’m talking about my own version of post cards from the edge. My thesis, if you will, is that the hell we think we are living is likely nothing like the hell that others are unable to extricate themselves. They can both be as real, terrifying, and gripping, but as I’ve seen, the greatest ticket to my own Purgatory of sorts, is partially bought by attitude, a bit of compassion from someone else, and most of all, the willingness to forego the conclusion that “it is what it is.” The fatalistic, noncommittal shrugging of one’s shoulders will keep you in a land of confusion, mediocrity, or your own private hell.

Don’t fight a losing battle, but neither give up because you haven’t found a solution yet, even if your mental faculties are running on safe mode at 2:00 am and the guy next door is still asking, “Is anyone out there? Please?” There are a lot of things I’m dealing with that are downright hellish, but I’m not participating in some hell of my own construct. And I hope you aren’t either. Don’t wait to extricate yourself from a truly disagreeable situation. Find the solution…or better yet, be the solution for the person who is asking if anyone’s out there.

I hope my two cents for the day didn’t come across as preachy. It’s not my style, really, but after three weeks of different voices from patients with dementia, you wonder, hence my derailed train of thought.

Have a wonderful evening – be well, stay strong, much love to you all!

Why me? Why not me?

Cancer is no respecter of persons. It doesn’t discriminate against age, gender, race, or socioeconomic strata (unless you're a conspiracy theorist and then we can go to town!). We can certainly reduce our risks by behavioral things, but when I think about how I ended up on the business end of a leukemia diagnosis, I’m a bit flummoxed.  Here are a few statistics I’ve found from the National Cancer Institute, white guys like myself contract this fun-ness about 4.5 times in every 100,000 people, and of those of my age group (45-54), we’re about 11.8 of the whole. If I were to generalize, I’d say I’m a bit young, but obviously it’s not unusual. Looking at the details from there on are kinda sketchy because so many people who contract AML are typically much older and the body has a much more difficult time healing. The old ‘cure is worse than the disease’ applies here. The details from then on seem to be open to interpretation and I’m going to go with what my doctors are saying rather than interpolate what I think the statistics imply.

My daughter’s father in-law is an AML-survivor and from what I hear, is doing well. How nice to be on the downside of this! When I chatted with her on the phone today, she was still a little freaked out about the familial similarity, but of course, undaunted. I’m looking forward to seeing her soon. Who knows really what causes this thing? Is it a cosmic crap shoot?  Is it because of my aviation career where I absorbed an unhealthy amount and type of radiation? Who knows? And more to the point, does it matter?

I had a busy day of procedures and visitors and I’m now in the middle of an unwanted all-nighter with transfusions that require intensive, periodic interruptions from the nursing staff to make sure I’m not crashing. And yes, it would have made more sense to just do this tomorrow when nothing is happening here. The speed of medicine is often excruciating and precisely inconvenient, but my social plans have taken an unwitting back seat to the world of phosphate binders, antibiotics, and the rather specific unpleasant details of my latest bowel movement. So, I’m awake and with you tonight and I’m unpacking that, ‘Why me?’ question.

People who know me from any length of time know that I’m one of the first to throw a couple of ‘frog skins’ to someone for those fund-raiser events.  I’ve been a little more generous than I should at time, but I always thought karma would favor me in my own efforts, so when the AIDS walks, Multiple Sclerosis rides, diabetes races, and the Susan Komen (and other) cancer relays were out there, I just routinely contribute. I even have supported a high school classmate who has run marathons for the Team-in-Training to support the Leukemia-Lymphoma Society. (That one hit a little close to home as I thought back about all of this!)  He lost his father to a blood cancer years ago and through these events, met his partner in life. I, myself, have done some endurance events to raise funds for HIV/AIDS in both Minnesota and Southern California. Each time I participated, I got far more out of the experience than I put into it. I’m a staunch supporter of these kinds of events because they continue to keep the dialogue moving in areas we don’t like to talk about except around the water cooler. If you don’t say, “cancer,” it won’t happen, right? Except that it does. Believe it.

I’m also the same guy who donated blood over forty times, making me one of those “five-gallon” club members the Red Cross loves so much. Tonight I’m getting some of that interest transfused back into me, so I guess between the money, energy, and flesh I’ve invested over the years, the ‘what goes around comes around’ is coming back on me. I’m in decent physical shape, able to negotiate the black diamond slopes, physically adept on a bicycle, and working toward chiseling that middle-aged paunch away from my mid-section. I eat reasonably well, my alcohol intake is modest, and I don’t smoke.

So, again, why me? I'm not the guy that fits this demographic. You'd have thought I thoroughly dodged that bullet and we could by-pass the "why bad things happen to good people discussion."

And as much as I don’t want to be the one drinking this rather bitter cup, I have to say, “Why not me?” Because I have so much going for me aside from some rogue marrow, I have a better chance to beat the dire survivability that others may not have. The other thing I have going for me has nothing at all to do with my physiology and everything to do with you, dear readers. 

I had a very good friend drive all the way up from Southern California to be with me today and while I was getting a CT scan, visited another vet who didn’t have the luxury of someone to visit him. I don't have to question that I have people rooting for me. I have had the great good fortune to *know* without question that I am loved, that I am supported, that I have a crowd of supporters literally around the world.  The power of social media is surprising in its scope, but it also is another stark reminder that the same kind of thing I invested in these charity fund-raisers, I apparently invested in relationships to where I’m not just a “click” to someone on facebook. The flood of texts, emails, phone calls, gifts, well wishes, and on and on has been genuinely humbling and I can guarantee that while I couldn’t possibly return the sentiment individually in any reasonable time, I see every one of them and there will come a time when this is all said and done where I will have quite a long project ahead of me to repay the manifold kindnesses you have extended. This is going to be a long-haul, I know, so I appreciate the endurance in which many of you have already intimated.

I got the word late yesterday that one of the tests that indicated that the cancer would return and suggested I would need a bone marrow transplant came back positive.  I don’t have a time frame, but that means I’ll be flown to Seattle for the transplant.  I’m told Seattle is lovely in the summer and that I’ll not be stuck in a hospital room and actually get to see a bit of it as I’m feeling able.

Silver linings may not be the things I expect, but I’m watching for them at every turn…and I do see a lot of them. Any of you who spend any time in the social media wasteland will have come across this gem.  My high school classmate sent it to me and I remember seeing it back when it came out and crying then.  Now, I watch it every day and still cry because the resilience of the human spirit cannot be vanquished by cancer, but is rather often defined by how coming through it. My hope is that I'm able, with your help, to maintain a positive outlook and strength to keep fighting the good fight to put this all in the rear view mirror and to be able to pull someone else through the struggle.

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

Lost and Found at 2 am

You do some of your most profound thinking in the wee hours of the morning, I’m convinced.  I think that’s true because, at least in my case, I have more time to stew about it and really ponder on it. I don’t really consider it quality time, but I’ll take the brain CPU-power in the dark if that’s when I have it. I’ve been in and out of consciousness the past couple of days more because I just didn’t have the energy to stay awake than anything else and let me tell you that’s got to be the strangest feeling for someone like me who always has half a dozen irons in the fire. Fact of the matter is that when it comes to this kind of situation, nothing (and I mean nothing) matters outside of the absolute immediate.

So, what kinds of things occupy my mental CPU at 2:00 am? Well, there’s the IV alarm because I rolled over on my fluids tube and I made a kink in it. “Downstream Occlusion” is at least something I could do something about because I can adjust the tube myself or roll over, but if it’s upstream or if there’s something else, I’m out of luck and then that persistent beeping becomes louder and then I have to push the nurse call…if I can find it.  Maybe they’ll just hear it. Maybe it’ll just go away.  No, I have to do something. I have to find the nurse call. Wait, which cord is that? It all looks the same right now. Am I really that out of it? No drugs, mind you, just out of it. So, the beeping persists until I can muster the veritable willpower to find the nurse call.

Then there’s the baser stuff like getting up to use the bathroom. At some point, reason sets in and I muster the strength to use the commode chair just a pace from my bed…and then call the nurse to move the nastiness away afterward. Why in the world would this be such a difficult thought process, you might think. I can’t tell you, honestly, except to say that being in such a weakened state, you just don’t think in auto-pilot like you’re accustomed. You communicate using big-boy words and tell the doctor how it hurts and they look at you over compassioned-rimmed glasses and years of experience, but inside your head, you’re thinking, “I think I need to go to the bathroom so you don’t put me in a diaper.”

It can be a humiliating, dignity-robbing experience to fill a commode chair with your own waste, of course, but it can also reaffirm your faith in the medical profession that it’s not just about numbers, chemicals, and needles, but about some of the softer things that speed healing like smiles and caring. To make it work, there has to be as much of both, mixed with a modicum of tough love to keep you fighting when you just want to roll over and sleep.

I felt I had made a triumph to feel strong enough to take the extra four paces to the bathroom last night, not to mention not having to require someone to inspect my bowel movement. Having a shower downright poured energy I didn’t have into me.  On the lost side, I weighed in at 179.1 pounds, a weight I haven’t seen since it was the 80s and I was ‘too sexy for my shirt, to sexy for my shirt, too sexy.’ Now, I’m probably getting too skinny, but that’s another story.  I’d really enjoy eating more because I have to say the food here has really been good, but I just don’t feel like it.  I’ve tried to eat as much as I can, but it just doesn’t taste right. The fruit is as much as I care to eat and everything else is a crap shoot.  The kicker is that the minty-fresh taste that the toothpaste and mouthwash people developed tastes rather foul as well.  I really wanted to have that much to fall back on, but alas, I have this lingering sorta sweet taste from them that isn’t quite minty and not quite fresh! Add to some abdominal cramps, it’s just not a good recipe for a bit appetite.  The docs don’t think there’s anything bad going on, but they do want to do a CT scan on my gut to make sure nothing has settled in.

On the found side, I guess I’m finding it far too easy to sniffle over stoopid stuff on shows I watch on Netflix.  I was watching a medical drama (I know…am I crazy?) before all this went down, called, “A Gifted Man,” and inevitably, everything works out emotionally except for the guy who doesn’t and everyone is sad including me and my eyes just open up over this fictitious drama about a condition that someone looked up in a medical book because it made a good script. Good grief, I’m a basket case!

So, I’m attaching an unretouched picture (and it won't let me rotate it) from today to prove that I am, in fact, in lousy shape and that my scruffy look is not something to be sought after…and I had to leave my attitude t-shirt on as well.  I figure if you gotta be in a veterans hospital where “cussin’ like a sailor” is pretty normal, this is pretty tame.  And no, I’m not much of a potty mouth although I have let one fly from time to time. I am, after all, all too human.

So, it has definitely been a day of lost and found and I’m sure I’ll find some other things I just didn’t expect and lose some other things that long-needed shedding.

Thanks to the many of you around the world (literally—didn’t know I had a veritable fan club in the Philippines) who are rooting for me. It does mean, the literal world to me.

Stay strong, be well. Much love to you all J

Not a Good Day - Reality Stinks!

In the still hours where most people are sleeping, I’m letting a tear slip out from the constant strain of this disease. The induction chemotherapy was wrapping up last night and as advertised, I started to go down. The fever, chills, cramps, and otherwise general bad feeling just intensified and the medical team went to work. Antibiotics, antivirals, an x-ray, and an extra blanket all told me they were shifting into high gear. As a by-the-way, if Costco starts stocking blanket warmers, I’m getting one.  I can’t tell you how comforting that warm blanket felt in the midst of all of all the hub-bub. Charles Schultz said that “Happiness is a Warm Blanket” and it really is!

That warm blanket really was the highlight of the past 24 hours. I’m not exaggerating to say it was literally the worst I have ever felt in my life and unfortunately, I think it’s safe to say that wasn’t the last night where I’ll be wiping tears away. There are people in far worse condition than I and honestly, as I was laying alone, it wasn’t fear of dying or being alone. I think it’s just an overwhelming feeling of all of it. No one thing is that bad, but when you add it all up, it’s a big honkin’ horse pill to swallow…and I’m just gagging it down because like it or not, it has to go down the gullet.

So, here’s where things may get a little graphic, and I think it’s important that I give forewarning about it because being sick with cancer isn’t a sterile thing.  It’s messy, it’s awful, and it robs you of every dignity you otherwise had. I also want to write this out because I remember reading some rather stark and less-than-pleasant details on my friend’s blog who is on the downside of AML. I think that if someone reads this in the future, I don’t want to be stark or gross, but I do want to be honest about what’s happening. Again, not fun, not pleasant, but neither will I sugar-coat it.

About 7:00 last night when I started crashing, I just wasn’t even strong enough to unplug the IV pole and walk ten feet across the room to use the toilet. The nurse brought in one of those commode chairs and I bristled at the thought of using a bathroom in any place other than, well, a bathroom, but the alternative wasn’t a good one either! Over the course of the night, I performed my duties many times and the diarrhea that made it into the little pot meant I was clean in my bed. Small favors, indeed!

No less than ten times did the IV alarm go off and wake me up and I have to say that constant, rhythmic beeping was akin to a Chinese water torture, yet I just didn’t have the strength to do anything about it. I’ve spent most of the day just sleeping, unable to really eat, not feeling like doing much of anything other than just sleep.  The doc says that for a couple of days, that’s probably OK, so I will probably return to that regimen when I’m finished here.  Taking a shower was today’s delight and I think that’s why I have any energy at all.  That, and my “Cancer is my Bitch” t-shirt arrived.  I’m wearing it proudly right now.

OK, no eloquence tonight, just the facts…I’m going to sleep.

Thanks all…stay strong, be well.

It’s not “all good,” but it’ll be OK

“It’s all good, bro.” I’m not sure how we get some of these sayings, but like it or not, they’re here. Just sayin’.  I’m finding myself just a little dubious about saying that having leukemia is “all good, bro,” but I do have a sense that, in the end, regardless, it’ll be OK. I don’t want that to come across as glib, but the reality is that it really will be OK. There’s no surprise that this is just plain gonna suck, can’t get around that part, but I do believe it.

How can I be so sure? What’s to keep me taking the stairway to the morbidity train and finding I’m not going to win this?  Well, none of us wants to go down those tracks, but it’s possible, isn’t it? How do you make lemonade out of that bitter brew?  At this point, I honestly don’t have a good answer. I just know that regardless of what happens, it’ll be OK. I should be direct in saying, too, that I’m not one of these people who simply take stock in a scripture says thus-and-such about “all things working together for good.” In my case, I’ve just lived enough to know that on the other side of awful circumstances reside life lessons that make you uniquely qualified to be there for someone else.  For those that take solace in holy writ, I know that being a leukemia patient would present an opportunity to walk that out along with a number of others and I commend them for their courage to put their own particular faith to the test. I will simply say that for me, walking through a set of life-altering situations totally change the way you look at things…if you let it happen. I think it’s fair to say that for both sets of people—those who subscribe to a particular faith and those of us who do not—should expect to see things radically different on the other side of a challenge like this.

As I said right off the get-go, I don’t want to come across as casual about an acute leukemia diagnosis because it’s anything but.  Thankfully, in my case, it was caught early and I’m in pretty decent physical condition despite the obvious.  I will say, too, that I have an incredible support network that has helped me to rest where I would otherwise be frantic about the practical details, especially since I’m an eminently practical kind of guy!

Yesterday, in fact, I started to feel the physical effects of what this is all about and I ended up having a transfusion of two units of blood to keep me from sparkling like the Twilight vampires. I felt kind of…ick. I don’t know how else to put it, but just feeling less than good.  Ironically, this is the level I’d consider thinking going home from work might be a good idea…might be a good idea. Just pop a couple of aspirin and plug away like I always do. “It’s all good.”

But it’s not all good.  It’s actually pretty bad of course, but because I’m writing this from a hospital bed, you know that already. My white blood count is way down to practically nothing and my immune system is compromised to be susceptible pretty much to anything in my own body like all the bacteria in my gut and on my skin and anywhere else that it is usually taken care of by this army of white blood cells – the neutrophils.  The basic layman’s explanation is simply that the chemo has been killing them off along with the leukemia cells so that my immune system can re-boot.  Based on another test that is brewing, we’ll know whether a bone marrow transplant is in the offing.  If that happens, there’s another round of things that would happen in Seattle and it could take a little while.  This is no quick process, and while it’s not all good, it’ll be OK.

No, if I end up going to Seattle, it’s going to be rather long and drawn out and while I’ll have help, it’s not home and it’s going to be arduous and painful, but it’ll work out OK. I’m saying that now, not really knowing the full import of that. I’ve had two survivors (fellow veterans) who have returned from their time in Seattle and their stories are similar and while it’s not all good, it’ll be OK.  I’ll be OK. I keep reminding myself that, yes, I’ll be OK and that all the things that I have to live and fight for will be there waiting for me and that, yes, I’ll be OK.

Yeah, it’s scary. It’s uncomfortable. It’s tiring. It’s painful. It’s awkward. It’s all those things, but it’ll be OK even if it’s not good, bro’.

Vanity, Vanity, all is well…comfort.

I commented in an earlier post that I typically sleep without a shirt, and before putting my shirt on the other day, one of the interns who sees me first thing in the morning commented that I fit in like the other men at the VA now, except that I’m missing tattoos and a beer-belly!  I’ve only seen one other woman patient here and now that I think about it from my limited walking around the floor, most of the inpatients are in various states of undress – mostly without shirts. Having a PICC line in my arm full time, it’s a bit of a pain to be constantly adjusting the shirt, even though athletic sleeveless tee-shirts are the mode du jour in the latest hospital fashion.  Besides, they go well with my traction socks that the safety people want me to wear for my errands to the bathroom.

Yesterday began the next set of fashion relaxations as a result of my (intentionally) declining white blood cell count. I will no longer be able blade shave for a while, so I’ll start that scruffy looking appearance, which, for me, is, well, pretty scruffy as my beard comes in kinda patchy. The goatee area is pretty consistent and heavy, but anywhere else, it looks a bit ‘less than.’ I tried it once after getting out of the Navy, but it looked awful.  So, the big bushy beard look is out for me. Besides, I’m just days away from not having to shave at all for another reason.  My newest doc from the Huntsman Cancer Institute came in over the weekend and very matter-of-factly said, “You know, you’ll be losing your hair.” Yeah, I know, it’s one of those rites of passage for chemotherapy, but having the doc say just makes it more like it’s a foregone conclusion – thus shall it be so! And when they say that, it means every hair, including all the hair on your chest from all those picante sauce meals you were proud of…and the eyebrows, eyelashes, and whiskers. So, no shaving for me. 

For those of you, who like me, are prone to ingrown hairs, it’s not such a bad thing, but I have to say it’s a bit unnerving for it to happen in this way. Soaping up in the shower and shaving there has been a time-honored habit for who knows how long for me and I guess that, along with wandering around in various states of undress like the other guys here at the VA just became normal.  The irony here, may be lost to those of you who haven’t served in the military since those days were spit-polish and inspection.  Haircuts were just so, everyone was clean-shaven or trimmed, and uniforms were pressed just so. What could be further from those days than where I am now? It’s not like there’s a degradation of sorts or even vanity, really. It truly is about comfort and I guess in a way, I’m sorting out inside of me that it’s OK to just be as comfortable in my own skin while laughing at the absurdity of it all.

And as I found out yesterday, the dress code of sorts isn’t the only thing wrapped in absurdity here.  As is part of our weekly family tradition, we enjoy a coffee together on Sunday mornings and it was so nice to have everyone up here where I could hold court from the hospital bed. My mom and her husband, my aunt, and my grandmother made the trek up here and we had our coffee here instead of from my grandmother’s living room where she normally holds court!  I’m truly honored. She wore her American Red Cross pin and began by pointing out that she had been one of the “gray ladies” back in the day and went through her spiel of things she would offer the recovering soldiers including note cards and cigarettes. Wait, cigarettes in the hospital?  Yes, it wasn’t that long ago that there were smoking and non-smoking hospital rooms. Wow, have times changed!

My day was delightfully filled with people from my past and present and thankfully, they overlap now. Thank you, Ann, Gina, and Jameson for bringing by the lovely Trader Joe’s goodies. It was so nice to chat and get caught up. And thank you, Jeff & Jane for your encouragement as well. I thought for sure I would end up in tears with you guys here, but your strength, candor, and smiles were the order of the day. The button that says, “No one fights alone” is my constant reminder. Thank you!

Time to begin another day in the fight (not alone!) – be well, stay strong, and thank you all!

What Do You Say?

On Thursday, February 21, I had the unequivocal words spoken to me that changed the course of my life spoken to me in stark terms that left no interpretation: “your pathology says you have acute myeloid leukemia.” The diagnosis of a blood cancer is not something I ever expected to get. It’s not something I was prepared to absorb and it certainly wasn’t something I wanted to be explaining to people over the phone. I just knew so little about it and my learning curve is still so high.  Going from a live-and-let-live mentality to fighting for my own life in such a short time has thrown me for a loop, to put it lightly!

Trying to explain the details to loved ones and family has proven a challenge as well. I don’t know what to say other than the obvious and from the receiving end, what do you say back?  I’ve struggled with it because as uncomfortable and downright frightening as it is for me, the discomfort on the other end of the phone or the stark look, often with tears, on a face is something that cannot betray the confusion and inner conflict of what to do or say next.

I’ve been pretty open about saying that I give a ‘pass’ to everyone in getting over the shock.  Shoot, I’m still finding myself wondering what’s going on. I’m finding myself crying out of gratitude for simply being alive, for the multitude of little kindnesses shown me, for no reason at all really, yet I haven’t fully taken this all in and thought about the stark fact that I have a life-threatening illness. I’m just plugging along as I still feel just fine.  It’s such a cognitive dissonance! So, what should you say when a ball like this gets dropped on you?

I’ve stewed about this over the past week or so after having communicated to so many people and the thing that comes back to me over and again is simply this: be honest. Everyone has their own way of dealing with shock and far be it for me to tell you how you should respond. Once the shock has sunk in, what I can tell you that I need is the same thing I wrote on day 1: just be there for me in whatever way you can. That doesn’t have to translate into anything other than what *you* feel comfortable with.  I have no judgment or expectations on what someone should or shouldn’t do. Just be there for me the same way you would want me to be for you if you were in my hospital-issued traction socks. A Starbuck’s extra hot peppermint mocha is great, but not everyone has the time, wherewithal, or is in town to stop by with one, so a smile, kind word, or a facebook post or photo with something that makes me smile can make all the difference.

I did a little surfing around to find out what is appropriate because let's face it, Emily Post doesn't exactly address this one head-on.  You can check out American Cancer Society - Ways to Respond for some good ideas as well as this list of do-nots!

I so very much appreciate the outpouring of kindness, sympathy, and real support from everyone that it has quite literally brought me to tears more than I care to admit. For those of you who are survivors yourself or caregivers of them, I can’t begin to tell you how much your very meaningful and substantial words of support have carried me and will continue to buoy me when things actually take a downturn, because we all know they will at some point.

Without belaboring the point, I hope that should you make a trip to the VA and see me sans-cheveux wearing the “Cancer Sucks” beaning my sister has ordered for me covering my impending bald pate, don’t be repulsed or join the pity party. I won’t be throwing one (and call me on the carpet if I do!).  I may not look good, I may not feel good, but the fact that you’re here for me will make all the difference in the world. Knowing that I have allies, people to hold my arms up when I can’t lift them will be what it takes. Be upset in your own way, but please help me be keep positive. If there were a single common thread I’ve heard from every cancer survivor I've spoken to since this ordeal has begun, it has been that keeping a positive outlook was what made all the difference. And while I do not consider myself a religious man, I do have faith – in you  my friends, family and extended circle of on-line acquaintances, in the medical team that is working diligently to bring healing back to me, and of course, I do believe in me.  An on-line friend of mine I've known for years sent this video to me and it encapsulated what I needed to hear at the time and they're what continue to need. The words jumped out of the screen and were just what the doctor ordered (although it wasn't on my chart!).

Thanks again...be well...stay strong!

 

Mortality Is Opportunity

I woke up to The Salt Lake Tribune this morning. There’s something intangible about pulling out the newsprint version and reading the paper over a cuppa sumpin’ that just starts the weekend off right.  That I’m doing it from a hospital bed makes it even better because it’s something that, in spite of being confined to this august institution of healing, I can have this little tidbit of routine in my life that until last Thursday, had been pretty, well, ‘normal.’

What struck me the most this morning is how the little things again mean so much. In reading through the paper, the usual political backbiting that makes all the news that’s fit to print, and a lot that isn’t, went by without much fanfare.  I updated myself with the stories that I had been following from NPR and moved on to local stories.  In the back of the local section, there are the obits. Before moving home to Utah, I didn’t even take a spin through that section because it was highly unlikely I’d run across a familiar name.  Here in Salt Lake where I grew up, I’ve seen grade school teachers I had and occasional familiar names or friends of friends. Today, I didn’t see anyone that I knew, but going back to a habit of when I was a kid, scanning through to see how old people are or when they’re young, how they died. Morbid curiosity, perhaps. One obit stood out. A pleasant smiling younger guy who died too young had succumbed to leukemia and while I’m not, in my mind, thinking my time has come, seeing something like that can’t help but make you think a bit, right?

Suffice it to say, that cuppa joe sure tasted so much more robust and the hot water in the shower was so much more delightful. The blue skies outside my window seem more vibrant and the fact that I feel no pain, nausea, or other discomfort, suddenly paled in the light of the newsprint smile of the obit. I’ve spent 50 years – a freakin’ half century – on this blue ball we call home. I’ve had the great privilege of seeing a lot of it through the Navy’s frequent flier program (aka deployments) and I’ve been given extraordinarily good health to enjoy it with, this little experience in the hospital notwithstanding. I have an incredible family and network of friends that so many people just don’t enjoy and if I were to meet my demise today, would be an extremely fortunate and blessed man.

Nikki, one of the great people here at the VA, got my PICC line all water-resistant and microwave safe for my shower this morning and brought me some stronger coffee that wasn’t part of my food tray. There is a special place in the afterlife for her, let there be no doubt! Something about doing to the ‘least of my brothers’ will land her in a wonderful coffee bar with seventy hunky baristas attending her every need, I am certain! Tammy, my über-nurse who ran interference with my run-in yesterday, will have a grand palace of her own where she will lack for nothing and be surrounded with the grateful smiles of those she has compassionately multiplied to her many patients over her years of service. I could include Daniel, the guy who never complains about emptying the trash and cleaning the room; I could add Tara, the nurse who attended me last week for one shift and remembered me this week to bring me down to a pizza party with the rehab patients so we could all be social; and I’ll have many more people to thank and recognize with my own grateful tears again as the days go on.

Even if you believe in reincarnation, we’re mortal beings and we have expiration dates stamped on our foreheads. I rather like to think we’re eternal beings of sorts although I can’t say exactly what that means. Who can, really? No one has the slide show from the other side to show us what’s in store. That said, I’m not going anywhere. Like I wrote yesterday, I have far too much ahead to fight for. Moreover, I have a lot of contributions I need to make and accomplishments yet to achieve and whether they are in the next few days or in the next few decades, I gotta get busy.

What about you?  What are you waiting for?

Don’t wait for the time to get introspective from a hospital room. Any one of us can make a positive difference and trust me, the little things really go a long way.

"God give me style and give me grace, God put a smile upon my face." -- Coldplay

Too Much Ahead Not To Fight

The sheer trauma of facing the “big C” seems to be less daunting as the reality of what the treatment entails comes out. Treating any cancer isn’t something you can simply prescribe a standard drug regimen or operation. It’s a complicated, messy, painful process that dances the fine line between art, science, and intuition. I’ve spoken with two other AML survivors and their treatment is similar to mine, but because our age, physiology, and details differ, there are different stories.  I’ve had two survivors of other blood cancers visit me thanks to the transplant social worker here at the VA who have shared their experience with me and while their histories were much more severe than mine, they had as well more remarkable survival stories.  It gives me great hope that, given my own situation, that I have both reason to be optimistic and to take this thing very, very seriously.

I was given a bit of a setback this morning as I took my IV pole for a walk.  The fancy yellow bag that all the toxic waste gets disposed in, flagged a nurse in the oncology ward less than 100 feet from my door.  He unceremoniously told me to go back to my room and chewed out my nurse for having the gall to let me walk outside my room. That escalated things in no time flat and I got an immediate apology from my nurse, who has been SO wonderful that there was some protocol that apparently prevents me from going outside my room with anything chemo-oriented. She apologized for the way this other nurse treated me and escalated it to someone else who escalated it further and I was visited by the head of safety, who brought things back into perspective.  She came in and didn’t do anything but introduce herself and make sure I had everything I needed. She listened. She didn’t draw out the instance, but I did bring it up in a way that allowed her to take care of the situation without making a case out of it. I think between the two of us, this unpleasantness won’t happen to another patient. While I absolutely want to observe protocols and the safety of others, I’m an inpatient, not an inmate. I think that drove the point home. Suffice it to say, she did it right.

So, it looks like I will be doing 10 push-ups every time I go to the bathroom instead of walking around the floor. That’s partially due to the Leukemia Weight Loss Diet Plan® not exactly working.  I’m up another pound, so they put me on a drug to make me urinate more frequently.  Lovely, huh? I suppose that wouldn’t be such a big deal except that I have to unplug the drug metering devices that push the medication through the IV into me every time I get up out of bed. It’s pretty inconvenient, all told.

As Friday afternoon descends on the hospital, you hear the typical things you would at any other workplace.  Co-workers wish each other a good weekend and it strikes me that I’m on what I used to call “perpetual Saturdays.”  It really doesn’t matter what day of the week it is for me.  I’m here.  Weekends were not made for Michelob in the hospital.  They are quiet, eerie places where the walking wounded rest. Thankfully, I have a retinue of visitors lined up for fun and games and I even have a junior slinky on my hospital tray I can play with.  I’ll bet you haven’t seen one of those bad boys in years, huh?

So, we’re now moving into the stage of things where it appears to be the classic military, “hurry up and wait” phase.  My nurse brought in a trend of my labs and it’s fascinating to see just how off my numbers are and yet I’m feeling just fine.  It makes me wonder just how good I’d feel if they were where they should be – yet another reason that I am the eternal optimist. 

A rather new acquaintance asked me essentially what I wanted to do when I got through this ordeal.  I started making a bucket list of sorts back when the movie of the same name came out, but nothing firm.  My goals had a lot to do with simply getting back to Utah for so many reasons, the least of which being, it is where I just feel I belong. But, as I pondered that simple question, one of the first things came to mind was to complete a century bicycle ride (100 miles) for Team-in-Training, a charitable organization that supports the Leukemia & Lymphoma Society.  I had supported a high school classmate who ran marathons for the organization and I guess now it makes sense for me to give back to an organization that is out there for me as well.  I’d really like to ride another AIDS LifeCycle, but this year, I think it’s safe to say that’s not likely going to happen. I don’t have a formal ‘bucket list’ even though mortality had its sites on me.  So, I told my new friend that I had “too much to live for, too many unspoken desires, too many things yet to do, too many stolen kisses yet to claim, too many mountains yet to climb…just too much ahead not to fight.” And so it seemed that if there were any other motivation, that was it – too much ahead not to fight. As if there were any other option.

Game on!

Thanks again to you all for fighting with me.