Thursday, February 28, 2013

Gratitude – Little Things Mean SO Much

It’s a quiet evening at the Salt Lake City Veteran’s Hospital. Normally, I leave the door ajar for ideal people-watching vantage.  Of course, that works both ways, not that I’m a particularly pathetic specimen for anyone to see…yet. With the PICC line in my upper arm, I thought it would be more convenient if I went shirtless this morning to make things easier for access to the lines when the nurses took lab blood or when it was time for chemo.  The intern this morning commented, “You look like most of the guys in the VA now.”  I had to laugh and I noticed he was right when I took my IV pole for a walk. I haven’t seen any women here and most of the men do indeed go shirtless in their rooms. In a place where we just want to be comfortable, it feels good to just forego the hospital gown fashion (although I favor athletic warm-ups anyway, and certainly when I’m of the room). It’s a small thing, but then again, the small things sure seem to mean a lot all of a sudden.

The hallways are eerily devoid of the gaggles of doctors, nurses, orderlies, and other people that make this place hum during the day.  The only noise I hear right now is the guy with dementia next door who is rather vocal. I get some work done during these hours and I also have some time to watch something on Netflix or reflect. I find that every time I come to a hospital – this time included – I find that there is something that for which I can be truly grateful. It’s not schadenfreude, but rather a profound reality that regardless of the state I am in, there are those who are working through something more challenging.

One of the nurses who attended me during my testing last week invited me to come down the hall and have a pizza lunch with the rehab patients since I would be on the ward for at least a month.  I got to meet up with a handful of other veterans who were experiencing an extended stay as well. We got to exchange a war story or two and the socialization was a welcome change to the usual. They have fun stuff going on over the weekends when this place empties out so, it’ll be a welcome change…and although the food here has been great, Domino’s hadn’t tasted so good. My dad ‘smuggled’ in a venti Starbuck’s mint mocha in for me today, so I was doubly spoiled.  As you might imagine, the Leukemia Weight Loss® plan is not yet working on me.  I was up 1.6 pounds and the nurse was suggesting that I get a drug to make me drop some liquid weight. Nope…not gonna happen! I was cheating.

I finished my third of three rounds of the Idarubicin (“red devil” chemo) and am mercifully feeling good still. I did a little reading on the Internet and found this is the stuff that causes hair loss and changes urine to a dark red color.  I’ve got about a week left of my full head of hair, so I’m enjoying not doing anything with it. I also understand that *all* of my hair will find itself rejected by my chemically altered body, including a welcome break from shaving. I’m somewhat prone to ingrown hairs, so I get a break from that! I had a survivor of ALL (really bad leukemia) who had a great big Western moustache that matched the size of his belt buckle talk to me about his experience yesterday since the topic of bone marrow transplant came up.  He told me that when he lost his hair, he essentially picked his moustache right off of his face!  I’m clean-shaven these days, but the temptation was almost palpable to let enough facial hair grow in to do something like that. I think I’ll pass on that opportunity.

All in all, today was rather tame compared to yesterday, but as my dinner was placed courteously on my bed this evening, I teared up and realized just how really good I’ve been treated. Every little detail flooded back to me over the course of the day from getting a lovely hot shower that was far from the “navy” soap up and rinse off 2-minute shower I took for granted while serving at sea to the smiles and genuine kindnesses each and every single person from the VA gave me while attending to my needs to my company sending over an IT guy to make sure I had what I needed to make my work more efficient to the calls, text messages, and hugs from loved ones made sure they knew how much I mattered…and then the flood of well wishes from literally around the world from so many places I’ve lived and loved. Every little thing added up to reinforce that I’m so very much held up by countless hands—seen and unseen. I was overwhelmed in an instant in knowing and feeling such an incredible bubble of a palpable love, it just overflowed.

Gratitude is such a shallow word, yet it’s what I have right now. I know I’ll make it thanks in no small part to the many, many healing hands – things small and great that bear me up where I just don’t see or feel or know that I need.

Thank you. Thank you, everyone for giving me what you have.

Wednesday, February 27, 2013

Dancing with the "Red Devil"

The list of chemicals being introduced into my body is long and mostly unpronounceable. Perhaps that’s why they just say, “chemo.” The idea behind this attempt to turn my body into a toxic wasteland is to reduce the leukemia cells (which would otherwise turn my body to a corpse) into own wasteland and eliminate it out through the urine.  I’m sure you could come up with a great tag line with that image. I prefer something elegantly simple, like, “Piss off, leukemia.” Pardon the coarse language, but this is war – war for my own life, quite literally.

Chemotherapy is a complicated balancing act of putting no-kidding toxic chemicals designed to destroy specific kinds of cells into your body without killing too many of the good cells.  The side effects are many and if you’ve watched any movie dealing with the ravages of cancer of any kind, you’ve seen the side effects – nausea, vomiting, loss of hair, etc. So, there are other drugs introduced to counter the side-effects and still more drugs to counter effects of the cancer itself, so there’s a lot of stuff going on inside this finely-tuned machine we walk around in every day and otherwise take for granted. 

Better life through chemistry! And to think, up to this point in my life, I was happy with caffeine and the occasional aspirin.

Cancer – and leukemia is simply a cancer of the blood – is a failure of said body’s finely-tuned immune system.  It’s likely that we all walk around with some degree of mutated cells that if left unchecked or uncontrolled by our immune system, grows uncontrolled.  That’s what happened to me. I don’t smoke, I have a glass of wine or cocktail once every blue moon or so, I eat well and I exercise several times a week. I’ll never be a Calvin Klein underwear model, nor am I the model for the food pyramid and anyone who knows me knows I have a thing for dark chocolate – especially when there’s a Godiva key lime truffle involved – but seriously, I’m pretty healthy all round. This was a result of something totally unforeseen. Up to this point in my life, I was the visitor, not the visited. These things typically happened to someone else, not me. Well, it happened to me and while I’m not reveling in the sudden change of events, neither am I throwing a pity party.

I am going to dance with the Red Devil.

The “Red Devil” is also known as Idarubicin.  It’s one of the two major chemicals being injected into a catheter running into a vein just below my left bicep running up over my heart called a “PICC” line. I wrote about it yesterday if you want to go back to it.  Today, the second of three doses of 24 ml of the red fluid was slowly injected into that port.  It’s a surreal thing as the nurse is dressed in a hazardous material gown and times the push.  As the clear line turns the reddish-orange color with the approaching poison, I know that it’s going to attack the rogue cells in the marrow of my bones that will otherwise take me out like yesterday’s garbage.  I also know that I stand a chance of feeling very ill because of the battle going on inside of me. I challenged the doctor about this when he told me I needed to be admitted right away because nearly half of my marrow was filled with cancerous cells.  It didn’t matter that I felt perfectly fine. In less than a month, I would feel deathly ill, and in another two, I could be dead. Swallow that pill! But starting the battle with the rogue cells with the chemical weapons of mass chemical destruction was the dance I must enter into in order to survive.

So, although if you saw me on the dance floor, you’d know I would never be chosen for “Dancing with the Stars.” No, you’d likely think I was a candidate for epilepsy rather than cancer, but I’m dancing with the Red Devil like my life depends on it…because it really does. And thankfully, I have none of the side effects so far that were presented to me. I continue to be optimistic and upbeat thanks to the many well wishes and kind words from all over the world (literally).

The Red Devil has one more number on my dance card tomorrow at 2:00 pm along with another slow dance with a drug called Cetarabine. We’re getting to know each other over a seven-day period. It’s my leash of sorts and it comes with me on an IV pole everywhere like a little lost dog.  I’ve been taking him on walks up and down the hallways to find that elusive fire hydrant so he can do his business, but I’m the only one who gets it!

Thanks to everyone for all the support, kind words, and encouragement! Keep the positive coming.

Tuesday, February 26, 2013

Well, that was pleasant...or not.

My room with a view was hardly the backdrop of a picturesque Italian countryside drama.  It felt more like a horror movie with a Roman numeral behind it – Chemo II: The Reckoning!  Watch as the 6” needle gets buried into the victim’s pelvic bone to suck the very marrow out (cue the screams!). Cringe as the PICC (parasitic insertion of core creatures) line is put precariously close to the heart (gasp!) to turn our hero into a host to alien toxic life forms. “You’ll feel a little pinch and then some pressure.”

The Leukemia Diet ® Day 1. This is *not*
the way  I planned on losing that last 10 pounds!  I took this photo last night. Weight: 185. Not the recommended way to lose weight!

All kidding aside, it was a rather painful morning. Because the initial bone marrow biopsy wasn’t looking at anything serious, the amount of marrow drawn out wasn’t enough.  That news didn’t sit well with me last night when I was told that I’d have the great good pleasure of having another hole in my hip bone to pull more marrow out for samples and that I’ll have to have it done again in 2 weeks to ensure the leukemia has been sufficiently vanquished and again should I need a marrow transplant (which is likely) and again in a year. I can push my way through pain, but on the other hand, it’s not something I revel it.  I know some people really enjoy it, but I assure you, I don’t happen to be one of those said people! The other rather uncomfortable but again not unbearable procedure was the insertion of a PICC line into my arm.  A PICC (peripherally inserted central catheter) line goes in just below the bicep and works its way along the vein to a place just above the heart.  It can stay put there for days or even years where a typical IV has a relatively short period where it is effective and before there are other effects where it needs to be relocated to another site.  The other good thing about a PICC line is that blood tests can be drawn directly from it instead of having to be stuck with another needle every time it’s needed. There’s a guy that comes in here from time to time who has had a PICC line in for over four years. I’d rather not have this thing with me after leaving the hospital, but…I don’t want to have it put back in either, so we’ll cross that bridge when we come to it.

The painless part of the morning was talking with the transplant psychological team. They asked me about all kinds of things to make sure I was emotionally coping with what’s going on here.  I was pretty up front in saying that it really hadn’t hit me fully. I’m sure it will and I’ll be able to just let down in the privacy of my ultra-posh hospital room! We talked about the transplant process and later in the day a social worker talked a little more about the actual process. There’s a lot that is coming together from the periphery that will come together soon enough.  So much has happened in such a short time.  Just a few days ago, I was living a normal life, pursuing the dream (and finding it, really!), and then my world turned upside down and the thing that I always saw as happening to someone else was happening to me.  Yeah, *it* (and you can fill in the blank of what *it* is) can happen to anyone, truly.

There’s nothing like an event of this magnitude to change your perspective on the world and to prove again that there is so much to be grateful for. That’s honestly not a bunch of fluff and I really do get the fact that at any time now, the nastiness that is chemotherapy will start to make me feel like about a million dollar debt with the mafia coming in to collect the vig a month early! Truthfully, though, as I take my IV pole out on a walk to do its biz (since I don’t have the dog with me...and seriously, where are the fire hydrants in these hospitals?!), I see others who are in pretty rough shape, far rougher than I. I know full well, too, that on the other side of this, there’ll be some things I will have that I didn’t have before that will put me in the unique position of ‘paying it forward’ to someone else who needs it at just the right time.

Multi-tasking at its finest! Editing a document
while taking a call and getting chemo all at once

As each day goes by, I find myself surrounded by the kindness and best wishes from people from my past as well as my new reality, and some that are part of both. I was pleasantly surprised to have a cookie bouquet delivered at lunch from my new workplace. They have been so supportive and this just capped things off. Having my mom here when the toxic orange fluid entered my body to begin the war on this thing helped me to see that no matter how old you get, you’re still a mama bear’s cub. And closing out the day, it was so cool to see a high school classmate with her partner and son appear with a really nice gift and possibly a date this weekend to play cards or a board game. This place turns into a ghost town on the weekend and being here alone ain't a good thing.

It’s the little things that mean so much. Thank you to everyone who has reached out in kindness and in even the smallest gesture to support me.  Y’all are awesome!

Monday, February 25, 2013

Let the Games Begin!

I still don’t think this has sunk in.  I haven’t mentally processed the fact that I even have leukemia, let alone that it is a deadly disease that threatens to kill me, left unchecked. From the time the doctor faced me and told me the stellar news, I’ve been in practical mode, getting things done: packing for a month-long stay (maybe more) at the hospital, doing laundry, setting bills to pay, and talking to family about what I’m facing in the days and weeks ahead. Thankfully, I was able to come home over the weekend and get some of the details taken care of, but when your life has just been ground to a screeching halt like this, it feels like everything is in a state of chaos.
Physically, I have felt tip-top with the exception of a headache courtesy of my spinal tap on Friday.  I still have doctors coming in today, surprised that I’m feeling as well as I am considering that 50% of my bone marrow is apparently teeming with cancerous cells. Apparently 20% is the benchmark, so you can see this isn't inconsequential. That’s a comforting thought, huh?
Mentally, I think I’ve accepted what’s in front of me and have mapped out what I can expect in broad-brush terms. That helped me to discuss with my employer how best to move forward. Everyone there was incredibly supportive, far more than I could have expected, especially in that I’ve only been a part of this organization for just over three months. And the real kicker is that the blood test that started this whole adventure was a part of the company’s insurance incentive. I’m not the first person to have had his life literally saved as a result of this simple screening.
I’ve spoken to a number of people in preparation for the next month and on the one hand, I’m faced with the stark realities of chemotherapy and its side effects; on the other, I’m feeling better about being able to weather it. I’ve also run across people who would urge me to seek alternative forms of treatment or fly to another city for another treatment option. As far as I can tell, I’m in the best of care and am being handled carefully, deliberately, and aggressively to ensure my odds for survival are the best.
Thanks to my friends Betsy Peterson and her partner Tracey Rush who is on the downside of Hodgkin’s lymphoma (the crowd roars), and their friend, Linda Huntimer who is also a cancer survivor and was able to get me a lot of practical information quickly. Big thanks to Paul Pavao, friend of mine from many years ago and father in-law of my own daughter, who is a fellow AML-survivor.  That my daughter’s father and father in-law are both dealing with acute leukemia kinda had her more than just a little concerned.  What are the odds? 
So, I’m sitting in a private hospital room – a room with a view, nonetheless. In less than 24 hours, I’ll have toxic chemicals dumped into a special IV line called a “pick line” which will attack the nastiness inside my bone marrow that threatens to take me out. We have some tests yet to run including another bone marrow draw, which I am eagerly awaiting, like having teeth pulled without Novocain. But that will give us what we need to know. Maybe then, it'll fully sink in and I can emotionally process this.  I know at some point it will hit me and I'll have the same shock as those I've broken the news to and come to terms with it all. For now, onward toward beating this thing!
Let the games begin!

Saturday, February 23, 2013

I Didn’t See That Coming (or I Just Have No Words, part ii)

No, I really didn’t see that coming, not even a hint of it. I’ve had the great good fortune to have a pretty good set of genetics.  Mind you, these aren’t the ones that make me devastatingly handsome or predispose me to the ideal physique with bulging pecs and a washboard “six-pack” stomach, but these genetics make it so that I just don’t get sick.  I rarely even get much more than a cold.  Yeah, I had the chicken pox when I was a kid and I had the shingles when I was in my early 40s, but nothing bad.  I don’t get flu shots typically and I’ve never been in a hospital except as a visitor. I’ve been safe as a driver and although I ski and cycle, never out of control, so I don’t get the fancy injuries that give me scars and the accompanying bragging rights.
That all changed Thursday.
I had a blood test for insurance purposes at my new job, ostensibly looking at risk factors like high cholesterol. Getting the test would qualify me for a 10% discount on my premium after my initial 90 days on the job had elapsed. When the test results came back, I saw that my cholesterol count was down 40 points from a year ago, so combining that with the weight loss I was experiencing from a healthier lifestyle, I was pretty happy. I had scheduled an appointment with my new general practitioner at the VA hospital here in Salt Lake so I could talk about getting off high blood pressure medication if weight loss got down to a certain point and he thought it was a good idea.  I showed him my blood test results from the insurance draw and asked him if there were anything I should do.  He asked me to get another draw while I was there, so we could see a trend.  I had gone out over New Year’s and caught a cold and we assumed some of the numbers might have been skewed a bit as a result. He also asked me to come back in a month to follow-up.  That month came and went and my blood tests didn’t change.  It was enough of a concern that he sent them to a hematologist, who in turn scheduled me for a bone marrow biopsy just a couple of days later.  If the word biopsy doesn’t get your attention, not much will.
My doctor and I didn’t discuss that at all.  Going to a clinic for a follow-up to biopsy with no other stops in between was jarring.  When I showed up, I asked what the hematologist was looking for and very matter of factly, he said he suspected I had something called myelodysplastic syndrome (or MDS).  Not having any idea what that was, we at least had a name.  I had the procedure done – something that was downright unpleasant but not unbearable – and then while the doctor was out of the room, I found it on my smart phone.  I was now officially freaked. MDS is a killer and includes famous victims like Carl Sagan and Susan Sontag; a more recent survivor in the headlines is Robin Roberts. He said he couldn’t be sure, but was likely to rule it out along with leukemia, so I was feeling quite relieved, but still a bit unsettled. The Internet is, without doubt, the hypochondriac’s playground and while I am probably more the polar opposite of a hypochondriac, I was now getting past freaked and more into scared…not quite panicking yet. I would be coming back in a week to get a better idea of what I was up against.
Then came Thursday.
My two moms (my mom and her sister – both kidders, both eminently sensible, and both fiercely protective of me) came with me just in case things got dicey and to take notes. When the hematologist came back, he re-iterated that he didn’t think I had an acute leukemia, didn’t think I had MDS, but did have a blood disorder that would require a marrow transplant in a few months and that he would pass my case over to another doctor from the Huntsman Cancer Institute to get a transplant in the works. Wait, he said the “C” word and the “L” words that shall not be named.  He said I had a leukemia, a cancer of sorts.  Back-up a minute.  I’m feeling healthy. My work-outs at the gym are progressing nicely. I’m skiing. I’m happy. I’m not sickly or pale and don’t have any of the symptoms…none of them. So, I would be getting with this other hematologist that specialized in malignant blood cancers in a couple of weeks when he got back from vacation.
So, there it was. I have freakin’ leukemia.
The nurse came over with excellent, practiced bedside manner and gave me her cell number and asked me to give her a call if I had any questions or concerns and that we would be getting a call with the appointment shortly. We didn’t make it down the hallway to the parking lot before she came back with the news that the doctor was rushing over from the Huntsman Cancer Center to see me now. He wasted no time in telling me that despite how I felt, the lab results were conclusive that I had acute leukemia.  Wait…back up again. This is the bad stuff. I couldn’t wait 3-6 months for the transplant because I don’t have 3-6 months. This could turn on a dime.  My mom asked him, “If this were your son, what would you do?” He didn’t miss a beat, “Admit him tonight and treat it aggressively.”
So, there it was…not just leukemia, but freakin’ acute leukemia.
He admitted that when he saw the lab results, he was expecting to see a sickly old man and was genuinely surprised to see me in good shape, with plenty of energy. That, notwithstanding, I drove home, packed a bag and was admitted a couple of hours later.  That night I got a chest X-Ray, an MRI, a battery of blood tests and cultures and then got some sleep before more poking and prodding.  It’s not just every day you get to wake up to someone sticking a big honkin’ needle in your spinal cord, followed up by another MRI, an echocardiogram, an EKG, a full body bone scan, and so much blood being drawn you suspect you’ll sparkle like one of the vampires out of Twilight. 
I got to come home for the weekend, but I go back in on Monday morning to, as the hematologist said, “treat this aggressively” with chemo.  I’m not looking forward to this at all, but suffice it to say, the alternative is not at all a good thing. I have a lot to live for and a lot of things yet to do in my life. No bravado here, but I’m going to beat this. There’s a lot of sick and fever ahead, not to mention the hair loss thing which I’m just stoked about.  There’s also the fabulous weight loss program, but I didn’t plan on losing the remaining 10 pounds this way, I assure you! I had that part nailed. I imagine there are going to be nights ahead where my pillow is wet from tears as well as sweat, but because I have people who care, I’ll not only survive, I’ll come out on the other side with insight I would have otherwise missed. There are things that we only see after having gone through our own hell of sorts. This is one such opportunity.
I have acute myeloid leukemia.
And as hard as it is for me to actually say, it’s harder for me to accept the kindness and concern of people. I’m just a bull-headed, do-it-myself kinda guy and the Navy made me ‘suffer in silence,’ more often than not. But I can’t do that today and I can’t fight this unseen thing inside me without the great sea of friends around me...and if you’re one of those people, I want to thank you now as well as later. I don’t know that there’s an Emily Post-prescribed response to those five words, but the thing I know I need the most is just you. Be there…just be there.
OK, pass the tissue. I need to melt down in a corner somewhere.

I Just Have No Words

Two acquaintances I have from high school years just buried their 22 year-old son. Stephen had Hodgkin’s lymphoma, a form of cancer that attacks the immune system. It wasn’t the first time someone I knew lost a child to the ravages of cancer. A friend I knew from my time in the Twin Cities cared for his son Cameron through his battle with anaplastic astrocytoma, a cancer affecting the brain. As a parent, I cannot fathom the depth of grief in losing a child.  A child is nothing short of your very heart on two legs. They are part of you. Because I’ve never experienced this profound loss, I can only assume that it is as if part of you dies. Having just returned to Utah after living out of state for a number of years, I felt the need to support these classmates of mine as best I could, so I attended the viewing. Stephen had touched quite a lot of lives, so the receiving line was rather long. When I finally got to my friends, I felt empty. I just had no words.
The best I could do was to simply be there. Sometimes, that’s enough. Because I haven’t been a neighbor and a friend for quite some time, I didn’t know what exactly they needed at that moment, but I hope that their family, their neighbors, and their church have been and continue to meet their emotional needs as well as those very practical ordinary ones.
I tend to be rather stoic, self-sufficient to a fault, and usually nonplussed by the hurdles that life puts in front of me.  I’ve generally cleared these obstacles through attrition or endurance and by sheer willpower more often than not, but when it comes to a loved one enduring suffering, a feeling of helplessness will attempt to overpower me.  It’s usually at a time like that where one’s faith steps in, but for me, I want something more tangible. I want some way to control the situation. I want to fix the problem.  The obvious flaw in my logic is that there are simply things that cannot be fixed in the quick, convenient way we Americans are accustomed.
Not every problem has a solution, not every disagreement has an anodyne, and clearly, not every illness has a drug.
The thing I’ve seen in people who have survived tragedy is that one of two things generally happens: the first is that that the glue that held their lives together just isn’t strong enough or they come through with an amazing sense of empathy, wisdom, and a new softness to their smiles that somehow belie the pain of their great loss. I have seen the latter in my Minneapolis friend and I’m rooting for that same result in my classmates!
I’ve stewed over this for the past couple of weeks and I still have no words, but I what I have is simply what each of us has - ourselves. I have strong shoulders capable of carrying the burden of tears and my arms are capable of enveloping the unseen feelings that want to spill out in every direction. I have the time to listen to the thoughts that were just yesterday, mundane and pretty boring. The only way I could really have any feel for why it makes any sense is not because I’ve lost a child, but because this week, I found myself wandering through the hematology/oncology ward at the Salt Lake City VA Hospital heading toward an appointment for a bone marrow biopsy.  If the word biopsy on the other end of the phone doesn’t take your breath away, not much can. But this wasn’t for a friend’s child or a friend. It was for me. As I write this, I don’t know what lies in front of me medically and while I’m a bit spooked, I’m not mentally working through the limits of my mortality.
And while I was mentally processing this experience, I knew what I needed and what I didn’t.  And just as it was with my friends just a couple of weeks prior, I just had no words…because words weren’t what I needed. I daresay there are people around us all that really don’t need our words as much as they simply need us. Don’t wait for a life-altering event to put that proposition to the test.
May I suggest you visit these pages, dedicated to my friends' children and if you are able, please make a donation of any size in their memory to the cancer charity of your choice. Thank you.