Friday, August 16, 2013

Better Life Through Chemistry

I never had one of those chemistry sets from the Sears Wish Book, but to be sure, that was me from a very young age. Yeah, I looked at all the toys and fun stuff all the other kids did, but I coveted the really cool stuff (ok, cool to me anyway!) like the chemistry and erector sets. My mom saved S & H Green Stamps and got my sister and me toys at the local redemption center, but blowing the house up with chemicals was not in the cards! Besides, I didn’t need chemicals to wreak the kind of havoc most 7 year-olds are capable of. I did that all buh mah-sayulf! I did get the erector set a few years later.
Look familiar? I can't tell you how long I used to ogle those pages for things I just couldn't live without!
I told all my relatives that I wanted to be a scientist and they took that young zeal of mine to heart. I remember my uncle coming back from Vietnam with gifties for all of us.  For me, he brought a microscope in a wooden carrying case. It had slides and cover sheets and it even had chemicals to stain and preserve my finds. It was a way cool present for a budding egghead nerd like me. In high school, I would all but stage a veritable coup d'éducat by rather publicly transferring out of my AP Chemistry class and into Aerospace Science - the harbinger of things to come. Some years later, I would forget that nerdiness altogether and become a way cool Navy pilot, complete with leather flight jacket, wrinkled flight suit, cocked garrison hat, and Ray Ban aviator shades! But…
I never forgot my humble egghead origins.
And I actually got called an “Eastern egghead” by a French student in La Place Clichy in Paris. This same student was adept in using English profanity, much to my chagrin – even had the right context. Shows you what a Sorbonne education will get you.
So, here I am today with a long tube connected to my PICC line, infusing that lovely toxic chemical goodness into the vein just above my heart. I can tell this is some powerful stuff by the amount and type of pre-meds I’m swallowing out of that little tiny cup the nurses give me about half an hour prior to 'go' time. I get a tad light-headed from either the pre-meds or the chemo (I’m not sure which), but I’m still feeling decent and able to think clearly. I had the staff psychologist tell me that I may not actually take a nose dive until about seven days post-transplant, but we shall see.  I’m in no hurry to go down that road. Today is actually considered Day minus 5 even though it’s the 3rd day of chemo. Day 0 is the day of actual transplant infusion.
I’ve come to the unavoidable conclusion that *I* have become an incarnation of the Sears chemistry set. Trust me, that is not a narcissistic declaration! Each one of us that comes through the MTU is an experiment of sorts. While each of us has some sort of blood or bone malady that requires a stem cell transplant, we all have unique genetic make-ups that determine the likelihood of survival of such an arduous procedure and ultimately how well, if at all, the graft takes to our bodies. And then there are the statistics and the intangibles. Things like metabolism, physical health, and even attitude all play roles in how well we come out of this on the other side. All of those factors create an incredibly complex puzzle for a team of doctors to work out and solve – and I would be one of those puzzles.
In speaking to another marrow transplant veteran, he told me that this process was nothing short of a pharmacological miracle. Considering I’ll have no outside physical manipulation, no radiation, and no surgery to repair my broken immune system, it is exactly that. It is all chemistry. Until yesterday, I had no idea there was even a field called pharmacological kinetics, but there’s a group of pharmacists that very precisely gage what is happening inside to in turn determine the exact gnat’s buttock of how much toxic chemical goodness I should receive. I also get a handful of pills that stave off really nasty nausea, seizure, and other lovely side effects that probably would make those ads on TV look pretty appealing. I guarantee you, there will be no ad encouraging you to “Ask your doctor if Busulfan® and Cytoxan® are right for you!” This truly is one of those, don’t call us, we’ll call you things. Pray you never get that call!
No sooner than the nurse flipped the IV pump on a few days ago, I went into chemo precaution mode, which means I am a sorta kinda toxic waste site. No one else can use my inpatient bathroom and I have to flush twice when I actually use the toilet.  In the meantime, I serve as an overqualified filter and drink incredible amounts of water, which naturally makes sleeping problematic. I then get to collect said premium, filtered, and processed chemo (i.e. urine) in cute little bottles for them to measure. During my inpatient stays, my intake and output is measured pretty carefully. Do you know how many cc’s are in your little half pint of milk? 236! That’s how many (most just round up to 30 cc's per fluid ounce). I also know that my full bladder is about the same amount as that little half-pint of milk, probably putting me in league with those people with IBBS (Itty-Bitty-Bladder Syndrome). Well, it feels like that anyway.
Yeah, in a sense, my routine has been reduced to intake of one set of chemicals that are prescribed carefully and then processed and filtered into another set of chemicals we monitor so we can start that cycle all over again.
How cool would that be? Adding to the fun, I have friends who ride Harleys for exactly this occasion. No, really!
While I have a little self-deprecating fun with all this, I know there’s a real art to this particular medical science. I’ve come across professionals since starting this that wanted to see me because I was not conforming to the mold. When I was diagnosed, I had 50% blast cells in my marrow. I found out some time later, that should have soundly debilitated me, but I was essentially ignorant to what was going on inside because I felt so good. A team of curious white-coated doctors gathered around my bed wanting to see the guy who felt so good in spite of the numbers. Even Wednesday, the pharmaco-kinesthesiologist (if such a title exists) wanted to see me because my system processed the chemo exactly according to his calculations. I think that’s good, right? He was apparently elated…but he didn’t end up coming to see me.

You know, though, I really hope that these people who attend me get super excited every time things work out; I want them to fist pump the air and with unabashed enthusiasm; I want them to shout for joy when one of us is feeling great and leaves the hospital for the last time because of what they did; and I want them to go home with an ear-to-ear smile, knowing that they performed one of those chemical miracles, that they saved not just one life, but a whole group of people who look to those of us who, because of no clear reason, just got awful damned sick. We…*I*…depend on people like that.

Do me a favor: go tell someone how much you appreciate what they’ve done for you. Bonus points for doing something nice for someone who can’t return the favor.

Be well – so well that you never know what it’s like to be where I’m sitting now.
Stay strong – because there are those who need you; and
Lots of love to all of you.

Music today … I had considered My Chemical Romance’s Thank You for the Venom for the title alone, but the music doesn’t feel like it’s mine.  So, we’re going with Chaka Khan’s Through the Fire

I look in your eyes and I can see
We've loved so dangerously
You're not trusting your heart to anyone
You tell me you're gonna play it smart
We're through before we start
But I believe that we've only just begun

When it's this good, there's no saying no
I want you so, I'm ready to go

Through the fire, to the limit, to the wall
For a chance to be with you
I'd gladly risk it all
Through the fire
Through whatever, come what may
For a chance at loving you
I'd take it all the way
Right down to the wire
Even through the fire

I know you're afraid of what you feel
You still need time to heal
And I can help if you'll only let me try
You touch me and something in me knew
What I could have with you
Now I'm not ready
To kiss that dream goodbye

When it's this sweet, there's no saying no
I need you so, I'm ready to go


Through the test of time


To the wire, to the limit
Through the fire, through whatever
Through the fire, to the limit
Through the fire, through whatever
Through the fire, to the limit
Through the fire, through whatever

Thursday, August 15, 2013

Embrace the Suck

Just when you think you have broken the code, they change the rules! After five inpatient stays at the VA Hospital in Salt Lake City, I thought I had things figured out. There are certainly parts of being hospitalized that don’t change, but the level of things for the bone marrow transplant here at the Seattle VA are ratcheted up a few notches with respect to keeping things über-sterile.  I’m now well into the process of killing my immune system off to make way for the new one, courtesy of “Hans,” my mystery donor. This is Spring Cleaning taken to a whole new level!
And to take Spring Fever to a whole new level, I settled into the new digs in the room at the end of the hall of the Bone Marrow Transplant Unit (MTU).  It has a lovely view and I don’t even have to walk to the window to see where I’d really rather be. My son and I had a quick intro to some rules of the road from the night nurse and he was off…I was not. I’ll be here for 3-4 weeks while I get my chemo and the life-saving transplant.

With that in mind, I set out to start learning the new slate of names of the medical and support staff that make up the MTU and to be sure, I want them to remember me. In the time prior to being admitted, I found a souvenir shop downtown Seattle with a metal sign that was intended for a bar that read name your poison. Being one to be literal when it suits me, I bought the sign, wrote Busulfan on the sign, and hung it on my door. Keeping things light!  I have a few other smaller things for the upcoming days. I’m intent on keeping people smiling so that when I feel lousy, they'll get me smiling again.
With my sign on the left and my new fancy dancing partner flashing her toxic chemical goodness for all to see. I'll bet you're *so* jealous! ;-)

Late in the day yesterday, I thought we might be getting close to one of those points where I’d need a little help smiling. PICC lines have been the point of infusion and blood draws for the past six months, the most recent of which was installed about 2½ months ago. Sometimes, these catheters migrate a little and can be difficult to draw blood from.  Such was the case yesterday, so after some contortions to see if the we could get a blood return and half a dozen unsuccessful sticks into my skin (peripherals), I ended up having to get a new line installed. While it’s not as painful as a biopsy, neither is it painless. Essentially, a narrow tube about 16” long is routed through a vein in my arm up to a junction just above my heart near the superior vena cava. To get to a vein big enough to support that catheter, the nurse has to use an ultrasound and get rather deep into my arm. It’s semi-surgical. I stay awake for the whole thing and get a local injection of Lidocaine. When I found out I’d be getting a new PICC line installed, I was less than happy. This is actually my fifth. One of the nurses who had been trying (in vein?!)  to draw blood earlier was watching the procedure and was actually rather quick to offer me something for pain. I’m tired of hurting, so I accepted. I actually have developed a rather high threshold of pain, but after this long, I’m ready to adopt better life through chemistry as my motto until this odyssey is over.

This is a PICC catheter going in and yes, that's me. The keyboard to your left goes to an ultrasound machine that helps the nurse/IV technician find the best vein. Inside the central line catheter, there is a little metallic piece that is picked up by the gray yoke/magnetometer on my chest so the exact location can be determined. After he positions the PICC, I get an X-Ray to confirm it is in the right place and they put a sterile dressing on the insertion sight. You can see the line going in my arm through a small incision.

Thankfully, the pain passes in a day or so and I get back to my normal jovial self. Even my favorite Brooklyn-born nurse told me I that I looked good today. I’m feeling good…for now. I know everything could change on a dime, so I’m doing what I can to enjoy the moment – carpe momentum! – or something like that anyway. By the time the late afternoon arrived, it was just the two nurses and me – from a pretty noisy day to a quiet ward. Suffice it to say, with no other inpatients, the nurses and I struck up a good conversation until sleep finally caught me.  I don’t know if it was the pre-meds, nerves, or something I ate, but I was back to my old hospital habit of staring at the ceiling in the wee hours of the morning.  Last night though, I was out cold.

I started chemo yesterday morning at 0-dark 15. It had to be started with near military precision so that blood levels could be measured at prescribed intervals. That tells the pharmacist how to adjust the dosage – something called pharmacokinetics. Say that 3 times fast! Since it’s impossible to reverse, I’m strapping in and holding on for the rough ride ahead. The transplant itself is less than a week away…hard to imagine that in six days, I’ll begin the process of coming alive.  So many parallels could be drawn at this point, but I’ll hold back until I actually have the new stem cells coursing through my veins.

Certainly, there will be much to think about as my body starts succumbing to the toxic chemical goodness and I take a nose dive back into frailty. There will be a lot as well to build up on the recovery side. I took a tour of the all new Salt Lake City Public Safety Building just before I left for Seattle and I saw the particular members of the structure that made it capable of withstanding an earthquake. Much like that, I know that my own body will resemble that in a way. It may appear similar on the outside, but perhaps a bit different than I can conceive; and I know the rebuilding will be good as well as necessary and it will belie the inner strength that comes from a visit with death. You can’t not be changed when you stare death in the face, but neither should one be cavalier about it. The stakes are just too high and they are permanent. It’s gonna hurt and it’s gonna suck, but the cost of life doesn’t have a price tag. Time to embrace the pain; time to embrace the suck (see note below)

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

Music for the day from the Goo Goo Dolls - Better Days

And you ask me what I want this year
And I try to make this kind and clear
Just a chance that maybe we'll find better days
Cuz I don't need boxes wrapped in strings
And desire and love and empty things
Just a chance that maybe we'll find better days

So take these words
And sing out loud
Cuz everyone is forgiven now
Cuz tonight's the night the world begins again

And it's someplace simple where we could live
And something only you can give
And thats faith and trust and peace while we're alive
And the one poor child that saved this world
And there's 10 million more who probably could
If we all just stopped and said a prayer for them

So take these words
And sing out loud
Cuz everyone is forgiven now
Cuz tonight's the night the world begins again

I wish everyone was loved tonight
And somehow stop this endless fight
Just a chance that maybe we'll find better days

So take these words
And sing out loud
Cuz everyone is forgiven now
Cuz tonight's the night the world begins again
Cuz tonight's the night the world begins again

Monday, August 12, 2013


I’ve had the great good fortune to be attended by world-class doctors. My attending physician and the fellows during my stay at the VA Hospital in Salt Lake City were affiliated with the Huntsman Cancer Institute and I’m finding out the doctors here in Seattle are similarly affiliated with another very well respected cancer hospital, the Fred Hutchinson Cancer Research Center, or “the Hutch,” as I hear people call it. It turns out that the stem cell transplant procedure was pioneered there and my attending physician is a veritable rock star in the hem/onc world, often away on speaking tours. To say I’m humbled to have this caliber of people in my court would obviously be an understatement!
In larger-than-life people like this, you might expect to come across a doctor with the stereotypical “god complex,” but I honestly haven’t seen that. I only had one encounter with one who was a bit on the insensitive side, but we sorted out our differences and as far as I could tell, all was well with the world afterward. What I haven’t quite gotten used to, though, is the matter of fact way some pretty ugly facts can be communicated. Some involving the side effects of the treatment are really hard to process, others leave me shaking my head thinking, “Seriously?” Yeah, I know they all mean well and it’s all in a day’s work, but feelings sometimes get ignored when the greater issue is saving the life. In the grand scheme of things, that makes sense, but the flip side of that coin is that feelings really have to be taken into consideration, precisely when you’re talking about saving a life…it’s the life which is at stake.
That may sound obvious, but the heavy conversations with doctors can make me feel like I'm missing the forest for the trees, so to speak. It’s so easy to focus on a detail and zone out while the rest of the paragraph the doctor is speaking just flies over my head. That’s the best reason I can think of to have at least one other person with you as you are working through one of those difficult conversations. It made a world of difference when I got my diagnosis as I just wasn’t able to process the whole picture, let alone formulate questions.  
It has been interesting and challenging as doctors have attempted to communicate next steps and side effects to me. The more sensitive issues I’ve tried to bandy about with some humor to make the message a little less difficult or awkward, sometimes to the dismay of the one trying to impart said message, but…I am, without a doubt, the eternal class clown underneath my staid exterior. Recently, a friend of mine welcomed me home from the hospital after a round of chemo and told me in the same breath that he was now a member of the cancer survivor club. He can be a cut-up like me, but his doctors were far less amused by his repartée than my doctors have been with mine…he just needs more practice, clearly. While my doctors learn quickly that while I do pay close attention to everything they say, I will be quick with a pun, a double entendre, or a word play to keep things a little less dour. After all, you gotta keep it just a little on the light side when you’re talking about dark topics. Even checking in, I'm quoting Monty Python lines … I'm getting better. I think I'll go for a walk. I feel happy!
And then there are topics that you just have to learn to take in stride because it’s all part of the game that is cancer, like all the really interesting changes that happen to your body. One of my first hem/onc doctors very sweetly put her hand on my shoulder and said, “You know, you will lose your hair.” True to form, I retorted, “I know, I saw the movie.” About three months later as I saw my hair returning, I saw her in the hallway and told her with great delight about this discovery. She got me back from the first time. “Well, you know,” she said, “you’ll lose it again.”
Touché, madame doctor! Well played.
During a conversation with one of the docs last week, he casually said to me, “You know, it’s a good thing that when you get to be your age; body image is far less an issue than with younger guys.”
My age? Doesn’t he realize I’m the youngest guy in the ward? I know, I know, that means diddly! I’m 50 freakin’ years old. That is my age. Now, this doc probably isn’t too much older than I am, but surely, he must have had some of the emotional struggles as the gray starts encroaching in on previously uncharted territory and the skin is a little less taught, not to mention all the other lovely physical changes that are part and parcel to aging. But let’s not forget that recently recovered hairline is about to recede all the way off again and we can probably add a little puffiness from the steroids to stave off the GVH...oh and damn, thanks to the chemo weakening so many things all over my aging bod, I broke yet another nail! Sorry, doc…body image is a big deal.  I can only imagine how women going through this feel. When I lost my hair during the first round of chemo, some nice people said I looked rather academic and my brother even shaved his head as a gesture of solidarity, but… *sigh* there’s no getting around the body image issue. It’s just as hard for us middle-aged folk as it is for the young guys.

And making this even more fun, I got a call from the MTU pharmacy at the VA Hospital here in Seattle this afternoon as I was on my way out, asking me what color the lumens of my PICC line were. That was an entertaining discussion of course, but it was outdone by the next call from one of the nurses at the MTU at the VA Hospital asking the same question. Then, of course, I got the fun news that I would be admitted tomorrow night for pre-meds instead of Wednesday morning. Oh, let the fun begin a bit early, shall we?

Seriously, I go to bed tonight with a lot of trepidation. I know it's gonna suck and there's no turning back. I can kid around and make a lot of jokes about it, but in the end, it's a scary proposition. I've received a lot of rather long, well thought-out and heartfelt e-mails and well wishes in the past 48 hours which tells me that there are a lot of people sending their prayers, best thoughts, and love my way. Over the next few weeks, I'll need all the available "close air support" you can muster.

Be well, stay very strong for me, and mucho màs love to you all.

Music for the day from Incubus - Drive

Sometimes, I feel the fear of uncertainty stinging clear
And I can't help but ask myself how much I let the fear
Take the wheel and steer
It's driven me before
And it seems to have a vague, haunting mass appeal
But lately I'm beginning to find that I
Should be the one behind the wheel

Whatever tomorrow brings, I'll be there
With open arms and open eyes yeah

Whatever tomorrow brings, I'll be there
I'll be there

So if I decide to waiver my chance to be one of the hive
Will I choose water over wine and hold my own and drive?
It's driven me before
And it seems to be the way that everyone else gets around
But lately I'm beginning to find that
When I drive myself my light is found

Whatever tomorrow brings, I'll be there
With open arms and open eyes yeah

Whatever tomorrow brings, I'll be there
I'll be there

Would you choose water over wine
Hold the wheel and drive

Whatever tomorrow brings, I'll be there
With open arms and open eyes yeah

Whatever tomorrow brings, I'll be there
I'll be there

Saturday, August 10, 2013

Point of No Return

Up until my meeting with one of the doctors at the Seattle VA Hospital yesterday, cancer was pretty much an academic exercise for me. Obviously, I took it serious enough to subject myself to some pretty nasty and less-than-pleasant procedures and pharmacological fun, but the severity of something that could actually kill me in the space of a few months? Nah, I never get sick. And I mean never, much to the annoyance of those around me. I didn’t need medication with the exception of an aspirin on rare occasion and until last year, I had never set foot inside a hospital except to visit or take one of my boys to the ER for a trampoline mishap (side note:  if it looks too fun to be safe, it probably is. Both boys got broken legs from a trampoline).
That all changed yesterday.

When the first sentence has the words you, diagnosed, fatal, the rest of it ain't gonna be an easy read. Breathe deep, grasshoppa.
The good doctor reiterated the protocol for the bone marrow transplant and gave me more paperwork to review and sign. This is in addition to the stack of papers I signed on Monday, which apparently only consented for participation in the Graft Versus Host (GVH) drug they’re developing and another academic study that is pretty much statistical. I feel like I’m at the closing on a house with the amount of small print I’m reading. There’s apparently a board that reviews the language to make sure it’s not too terribly academic, but you can’t dumb down words like cyclophosphamide. Much to my amazement, my spell check recognizes that!  Go figure.
He gave me a sheet that has the road map of my transplant for the time I’ll be inpatient.  If everything works according to plan, I’ll be coming in Tuesday for some premed dose of Phentoin, an anti-seizure drug. Seizure is a side effect of the type of chemo I’ll be taking. I’ll also be getting Allopurinol which is usually administered to treat gout, but in this case, it also protects my kidneys from the chemo. Finally, I’ll be getting a sulfamethoxazole-trimethoprim antibiotic cocktail. My rule, as of late, has been that if I can’t pronounce an ingredient on the back of a food label, I shouldn’t be eating it, but I’m getting good at these drug names. I guess I need to refine the rule a bit. On Wednesday, I will be admitted as an inpatient for more toxic chemical goodness that will officially be the point of no return. If I were to stop treatment at this stage, it would be fatal for me. If something were to happen to the donor at this point, I would die without another donor, period.
August 14 is Transplant minus 7 days. T-7 will be the beginning of four days of Busulfan and then on T-3 days, I start another chemo drug called Cyclophosphamide and the GVH test drug for a couple of days and I finish up on antibiotics and anti-seizure meds.
Then I get a day of rest.
All during this time my blood production capabilities are essentially being destroyed by the chemo, so I’ll be getting transfusions of red blood cells and platelets I will have absolutely no immune system and I will be feeling very, very ill. The drugs will attack all the fast growing cells which will include the obvious places like my hair, but it also gets my mucous lining throughout my GI track and that will make it all but impossible to eat, so I can anticipate getting my Nutri-fun through my PICC line. I’ve heard that people often can taste things when getting infused and I find myself often smelling something when my line is flushed with saline. Let me just say I’m putting in my order for crab cakes Benedict for breakfast and perhaps a filet mignon Oskar for dinner.  I figure if I’m going to feel like crap, my food should make up for it, right? A guy can dream a bit, right?  I’ll also get one of those insta-morphine buttons to stave off the really bad stuff.
Following the transplant infusion, I’ll be getting Methotrexate, another kind of chemo as well as an anti-fungal Voriconazole, and an anti-viral Acyclovir. During the next couple of weeks, the transplant cells will start to engraft into my marrow and at some point my new immune system kicks in. The other thing that the new stem cells do, as it was described to me, is go to the injury first. In this case, they go to the damaged mucous membranes in my GI track and I start to actually feel better and can eat again. Following closely behind that, the stem cells wake up in my marrow and the white blood cells that fight infection (neutrophils) start coming on line and doing their job. About 11-14 days after the transplant, I get discharged and begin the recovery process.
I’ll be going in for close monitoring regularly until the GVH is under control, I’ve recovered sufficiently, and am strong enough to have my follow-up care managed by the VA in Salt Lake City. GVH affects nearly every transplant patient and even though I may be getting a drug to stave that off, it will be something I have to manage carefully for a few years out and be cognizant of for the rest of my life.
Having that rather graphic picture painted for me, complete with real graphs on the white board, was informative, but a bit tough to take in, considering the details were painted out rather vividly for me including all the side effects, which included the words fatal, catastrophic, and death more than a few times. 
Reading these things in my consent packet was even more difficult. It’s not like I didn’t know that kind of thing was possible, but seeing it in black and white and me signing this stack of papers was hard. It made that academic exercise something real and in a few days it will be tangible. It will be happening. It will be the point of no return.
And even if there is no turning back and it’s going to be a taste of hell, it isn’t Dante’s Inferno. I don’t see a sign that says, “Abandon all hope, ye who enter here.” If anything, seeing such finality in signing these forms, I found myself mildly annoyed if not a bit in shock.  It’s tough to take in, it’s scary, and dammit, I have too much yet to do to be dealing with the business of dying.
So, screw the statistics and let’s beat this. I’m committed…no turning back. You with me?
I had tossed a few frogskins to a friend of mine from my writers' group in Minnesota who is participating in the Relay for Life for the American Cancer Society. I didn't give much thought to it afterward, but as the event was today, she did this for me. I've always been the guy raising money for others...being on the other side of the coin is humbling, but I so appreciate her thoughtfulness. Thanks, Malyssa!
Be well, please be strong for me, and again, much love to you all.
Today’s music is of course from Kansas, Point of Know Return (not a typo)
I heard the men saying something
The captains tell they pay you well
And they say they need sailing men to
Show the way, and leave today
Was it you that said, "How long, how long?"

They say the sea turns so dark that
You know it's time, you see the sign
They say the point demons guard is
An ocean grave, for all the brave,
Was it you that said, "How long, how long,
How long to the point of know return?"

Your father, he said he needs you
Your mother, she says she loves you
Your brothers, they echo your words:
"How far to the point of know return?"
"Well, how long?"

Today I found a message floating
In the sea from you to me
It said that when you could see it
You cried with fear, the Point was near
Was it you that said, "How long, how long
To the Point of Know Return?"

Thursday, August 8, 2013

Every Day is a Bonus

I’ve met a lot of people with cancer since my own induction into the NIHF (Nasty Illness Hall of Fame).  It’s like suddenly noticing that everyone is driving the same model of car you just bought. Sometimes you spot other survivors because of the awesome hairdo (i.e. lack thereof) or the PICC / port. Sometimes there’s just that vibe and you find yourself striking up a conversation with a perfect stranger as if they’re old friends. Those conversations aren’t at all uncommon and typically the people leave you feeling buoyed and encouraged from their positive outlook. After all, we’re all survivors and it takes a certain je ne sais quoi to keep breathing when the chemicals may be messing with your lungs.
Sometimes that positive attitude isn’t enough and the cancer takes a few fellow soldiers out. I’ve met two such people who were processing the news that their bodies weren’t responding to treatment any longer and I was on the other side of a curtain when a social worker was discussing palliative care options with someone who had just received that news. Just like the cancer diagnosis itself, just hearing the news of someone else’s impending demise stops you in your tracks.  It’s not so much a ‘there but for the grace of God go I’ sort of thing as much as it is reality when you’re battling cancer at all.  I don’t feel sick, but I know if I do nothing, I’ll be having that same conversation with someone with a practiced sad but efficient countenance. My doctor said as much on Monday. It’s powerfully sobering…and just like a good alcohol buzz, coffee doesn’t make this go away either, but it is, to be sure, the ultimate buzz kill!
I started writing this blog for two main reasons. Naturally, it’s a way of ‘controlling the message’ and letting everyone know what’s going on with a rather long-term, complicated condition I’m working through. The details are many and easily misinterpreted, so I try to use this forum to keep everyone who cares in the loop at the same time instead of saying the same thing over and again. That really gets emotionally taxing. But really, I write for me. Writing has always been a catharsis, a way of expressing how I feel and as a way of preserving some modicum of sanity in a situation where I feel like I’m held hostage to a situation that I did nothing to bring on and can do nothing to ameliorate. Admittedly, in the process of putting information out there, I tend to be a bit self-deprecating and flippant, but underneath it all, I can be one scared puppy on occasion.
Now, I wouldn’t try to start reading between the lines and wondering if I’m OK because that just opens up a new can of worms and if you’ve ever played with worms, you know how messy that can get! So, let me spare you the psychoanalysis and just come out and say that I’m OK. I will also say that while I accepted academically, a long time ago that I have cancer and am going to fight this son-of-a-bitch until one of us is the decisive victor, I struggle with the reality of it all. I have to trust a panel of test results that unequivocally, pathologically, and painfully say that I have acute myeloid leukemia even though I really have had no symptoms to speak of. Yet the facts point to a certain, untimely demise had I continued to live as if nothing were wrong. Hey, denial will only get you so far. Damn! So, I try to face it head on…but how do you process something you couldn’t see, feel, taste, hear, or smell? Highly experienced doctors and nurses all told me that the amount of blast cells in my marrow should have debilitated me, yet I was leading a very full life: working a job I really like, skiing black diamond slopes and hitting the gym every night. It didn’t make sense. And while I still can’t reconcile it at all, I’m not letting the lack of tangible evidence dictate my course. After all, my attending physician told me that my latest marrow biopsy was clear of cancer, but had something in it that indicated that left untreated, the leukemia would return and it would possibly be unresponsive to additional rounds of chemo.
The transplant is something I need in order to survive.
It’s easy to be a bit glib about being a survivor when there isn’t any discomfort, when there isn’t a tumor to be surgically excised or radiated, but it doesn’t change one iota the fact that without definitive, aggressive treatment, survival becomes increasingly unlikely. During the wee hours of the night, during my early hours in the morning before I’m around anyone, during the time I’m exercising, and during my conversations with other patients in the ward, I find myself pondering my mortality and profoundly grateful for each additional day. As my grandpa used to say, “Each day is a bonus.” He obviously said that as a way of recognizing his own morality and that his life was coming to a close. From everything I’ve been told and from everyone I’ve spoken with, it’s rather unlikely that my time is drawing nigh, as it were, but I still find myself with that same attitude: whether I have a few months or a few decades remaining in my life, every day is a bonus.
I don’t know when it was over the course of the past six months since my diagnosis that I found some peace with my mortality, with the possibility that I might not survive, but I did. There’s no fear or regret, but certainly a desire for more time to make a difference somewhere, somehow, in the lives of someone else perhaps – lots of someone elses. I’m sure that’s why I enjoy the charity bicycle ride events so much. But if, on the outside chance, that’s doesn’t happen, I’ll know I lived a wonderful and rich life. I’ve realized my childhood dream of being a pilot, I saw my children come into their own adulthood, and I knew what it was to “love and be loved in return.” I could list off a number of accomplishments, places I’ve seen, fun and off-the-wall things I got to do, but in the end, what matters most is the relationships I’ve had over the course of my life. Some of them, I got right and others were, shall we say, teachable moments, for this incorrigible big kid.
And maybe it’s now that I face death that I can say with some degree of certainty that I can live even more fully, both in the moment and out a few years. I’ll still look forward to learning from my mistakes, but the fact that I’m making them will reinforce that I’m alive and moving forward. No, I’m far from ready to be tossing in the towel, but I do want to make good on a vow I made to myself when I walked through my last big crisis. As I tried to reinvent myself, I came to the unavoidable conclusion that the woulda coulda shoulda game gets me nowhere but an invitation to other people’s pity parties and I tell you, I’m not going nor am I hosting one for myself. I vowed that I would live my life without regrets, that I would tell those I loved how I felt about them and that I would be happy in spite of my circumstances. I think I’ve done pretty well with that resolution and it has stood me well. That is, by the way, one of the reasons I end my blog posts the way I do. Regardless of how long I live, I want the last words you hear from me to be those of well wishes and kindness.
I don’t need to tell you that this story isn’t over. I have learned a lot of painful life lessons even in the past five months and those lessons will be refined a bit more over the immediate future as I walk through the proverbial valley of the shadow of death. I’ll get to see some pain and suffering, some tears, and some days that will just plain suck just because, but there are things left for me to do. I don’t have the faintest idea what they are, but I know I’m going to be busy for years to come.
I hope you’ll continue to stay alongside me for the ride. It’s going to be exciting, a little awkward and hard to watch at times, but exciting nonetheless. So be well, stay strong for me, and know that there is much love sent your way…every day.
Today's music comes from the opening of the movie Moulin Rouge, a variation of Nat King Cole's Nature Boy because "...the greatest thing you'll ever learn is to love and be loved in return."

There was a boy
A very strange, enchanted boy
They say he wandered very far, very far
Over land and sea

A little shy
And sad of eye
But very wise
Was he

And then one day
The magic day he passed my way
And while we spoke of many things
Fools and kings
This he said to me

"The greatest thing
You'll ever learn
Is just to love
And be loved
In return."

Tuesday, August 6, 2013

Not Going Gently Into That Good Night

OK, let me just say up front that supernatural and paranormal flicks have always been a bit of a guilty pleasure with me from the time I saw the black and white images of Bela Lugosi as the quintessential Dracula. As a young kid, it was a treat to stay up late on Friday nights for Nightmare Theater. When 11:30 rolled around, Fireman Frank, the guy who hosted the local morning cartoon show for us kiddies on Channel 4, would don his spooky alter ego, turn up the reverb, and do the voice-over to introduce the old Universal and RKO horror flicks. Yeah, the vampire thing goes back a few years. Suffice it to say, when the remake of Bram Stoker’s Dracula came along in 1992, I was delighted. It was scary, horrifying, and engaging. As an adult, I still like a fun scare, but the gratuitous gore so many current movies depend on is a big turn-off for me, so my current guilty pleasure is vampire flicks or TV series. Being Human, True Blood, and Moonlight are the ones I’ve taken to as of late and I even liked the story behind Twilight saga even if the acting couldn’t keep up with it.

The inimitable Bela Lugosi
There are so many parallels to the vampire mythos as I enter this next phase of my treatment. I joked that with all the blood that was being drawn from me that I’d be sparkling like the vampires in the Twilight series. Prior to coming to Seattle, I’d been infused 11 times.  I was advised yesterday morning that before the transplant process is complete, I will have received about 40 more units. It’s a good thing I had donated blood so many times when I was on active duty! With all those deposits to the blood bank, I guess you might say I’m liquidating that IRA. The clincher that puts me on the marquis of Le Théatre des Vampires is the sensitivity to the sun following my transplant.

No bursting into flames, but anti-rejection drugs will make me vulnerable to sunlight as it has a tendency to activate something called graft versus host disease (GVH). In some extreme cases, it can be lethal. Long sleeves, wide brimmed hats, sunglasses, and sun block are essential to my well-being for the foreseeable future. Time to make it part of my persona and own it.  Being of Scandinavian descent and living at high altitude, I’m pretty conscious of what the sun does to us fair-skinned folk and I even keep sunscreen in my trunk, but this is ratcheting things up a notch or two…or five. I’ve made a trip to the mall and REI to get some long-sleeved shirts and I found a fun wide-brimmed hat at the Pike Place market, so we’re on the right track.

For someone who is very active outdoors, this newly imposed sensitivity is a tough pill to swallow, but again the alternative is, as I’ve pointed out before, pretty dire. I’ve been advised that life as I knew it doesn’t go away, but rather some new habits to protect myself simply have to be incorporated. It means ordinary things like driving will require me to have sun block and my exposure to sunlight while skiing or cycling (my two favorite sports activities) will have to be in smaller increments and again involve sun block. In my meeting with the doctor yesterday, he cited an example of a cyclist who turned to riding at night. Bottom line: you do what you have to do in order to stay safe, sane, happy, and alive!

My appointment was intended to be a consent meeting for paperwork, but it got cancelled at the last minute and I met with the attending physician. He went over all the ugliness that could possibly happen much like those interminable pharmaceutical advertisement warnings, except this time, I paid attention because it was about me and all the fun will begin on August 14. The subsequent seven days will be what is referred to as the conditioning regimen. It will entail some pretty awful stuff and I’ll lose the hair I just grew back. Hair today, gone tomorrow. Right? It will also make me feel pretty damned sick. All the nausea and vomiting I’ve missed out on by being healthy the vast majority of my adult life will all visit en masse and the new brand of toxic chemical goodness will also do away with the mucous linings that make it possible to eat with any comfort. It will change the way my food tastes and at some point, I’ll get my meals through the PICC line in my arm. If I manage to eat during my stay, I’ll be the exception. I had attended a social gathering hosted by the Utah Cancer Action Network where someone had suggested I get a personal chef to ensure I got proper nutrition during my chemo. I was just a little bit taken aback...but keeping that in mind during my meeting, I asked the nurse what role nutrition played in my healing.  The nurse said (and I’m not sure how serious she was), “Some people see the hospital food as supplemental,” suggesting that I may want to bring in my food from outside. I’ll get my pad Thai after all…now to find a way to get it down and keep it down! I'll be meeting with the dietician soon and those questions will be answered.

After about 3-4 weeks inpatient, I’ll continue my treatment as an outpatient, commuting to the VA Hospital, replete with a chauffeur (my older son) and a nurse at the hotel to hook me up to an IV (my older son) and personal shopping assistants (my sons) and all-around good guys (my sons). OK, so I’m biased, but just a bit.

While the strain on my body for this procedure is a bit more rigorous than the mini-transplant, there are apparently fewer complications and less chance of relapse. Recovery time is also shorter, so provided everything runs smoothly, I’m focused on heading home the first week of December. I’ll have to return to the MTU at the Seattle VA for routine check-ups both for the leukemia and for two clinical studies.

So, there are a few more days of classes for my son and me to attend and a fun day and then the transition to the ‘dark side’ begins. No sparkly sunshiny vampire remarks. My restrictions are more like those of Mick St John's in Moonlight anyway…now I just need the supernatural powers. Yeah, I know, not gonna happen. But hey, you gotta admit the being brought back from the edge  of death thanks to someone else's blood parallels things pretty closely.

Alex O'Laughlin playing Mick St. John, a private investigator
 who also happens to be a vampire. It seems that every series
has some unique twist on the myth. In this TV series, he can be out
in the sunlight, but only for a short while. Stakes in the heart only paralyze.
Oh, I should point out that silver won't do me any harm, but a stake in the heart will still most certainly do me in permanently. Suffice it to say, I’ll steer clear of them as well as the sun.

Be well, stay strong, and much love to you all (seriously … or I’ll bite your neck because I may need your blood!)

Today's music is from Laura Branigan - Self Control

Oh, the night is my world
City light painted girl
In the day nothing matters
It's the night time that flatters
In the night, no control
Through the wall something's breaking
Wearing white as you're walkin'
Down the street of my soul

You take my self, you take my self control
You got me livin' only for the night
Before the morning comes, the story's told
You take my self, you take my self control

Another night, another day goes by
I never stop myself to wonder why
You help me to forget to play my role
You take my self, you take my self control

I, I live among the creatures of the night
I haven't got the will to try and fight
Against a new tomorrow, so I guess I'll just believe it
That tomorrow never comes

A safe night, I'm living in the forest of my dream
I know the night is not as it would seem
I must believe in something, so I'll make myself believe it
That this night will never go

Oh-oh-oh, oh-oh-oh, oh-oh-oh, oh-oh-oh
Oh-oh-oh, oh-oh-oh, oh-oh-oh, oh-oh-oh

Oh, the night is my world
City light painted girl
In the day nothing matters
It's the night time that flatters

I, I live among the creatures of the night
I haven't got the will to try and fight
Against a new tomorrow, so I guess I'll just believe it
That tomorrow never knows

A safe night, I'm living in the forest of a dream
I know the night is not as it would seem
I must believe in something, so I'll make myself believe it
That this night will never go

Oh-oh-oh, oh-oh-oh, oh-oh-oh, oh-oh-oh, oh-oh-oh
You take my self, you take my self control
You take my self, you take my self control
You take my self, you take my self control...

Sunday, August 4, 2013

Part of the Plan

There are two ladies who handle appointments at the Marrow Transplant Unit (MTU). They are amazingly efficient at directing traffic, they are calm under pressure, and they even remember my preferred name instead of simply referring to me as Mr. Park.  I watch the two of them and am amazed at their perpetual smiles and how efficiently they keep things moving. Considering the sensitivity of the work on the ward and that there are double the people (patients and caregivers) who are constantly coming and going, it’s actually rather noisy and even confusing, but these two ladies are cool customers!
After I left the hospital Friday afternoon, I got a call from one of these ladies. She told me that on Monday morning, I would be meeting with the doctors to determine my course of treatment – the next part of the plan. I was left with the impression based on the transplant date that I wouldn’t likely be seeing them until some time around the 12th even though they would be probably meeting on Wednesday to discuss my case. My gut feeling from what I’ve been hearing is that I’ll be undergoing a standard myeloablative transplant rather than the “mini” (non-myeloablative). Because of my good physical condition and age, I’ve been told I can tolerate the rigors of this procedure. If this happens, I’ll be admitted on August 14 and begin a course of busulfin and cytoxan, two very powerful chemicals to decimate my immune system so that the transplanted stem cells will engraft when infused a week later.  There are apparently fewer complications for this procedure than the mini and it will put me on the road to recovery and subsequently home sooner, provided that everything works out well. The other plus – and it’s a big plus in my mind – is that I would not be undergoing total body irradiation. Like I posted yesterday, there are plusses and minuses to both procedures and the big minus to the standard transplant is that it will make me a whole lot sicker than the mini and I’ll be inpatient for about 3-4 weeks.
I met with the transplant coordinator on Friday as well and she advised me that my correspondence with my donor wouldn’t be possible for two years. There are some very strict privacy regulations with respect to donor privacy and my correspondence has to be very generic and can’t even include anything that would indicate the country in which I am living! That leaves things pretty broad, reminding me of the kind of letter a third grader writes to the fireman who visits the class for a super show-and-tell. While I understand confidentiality, HIPAA, and privacy, I have a profound sense of gratitude that generic greetings cannot possibly convey. I’m inclined to believe my donor came from out of the country as the waiting period is two years instead of one, the usual period for domestic donations. When the prospect of a transplant became a necessity back at the beginning of this odyssey, there was some discussion about Germany having a very robust bone marrow donor program. At the time, I joked about coming through the process with a German accent à la Hans and Franz from Saturday Night Live. All I do know as a matter of fact at this point is that my donor is male.  Even though I am genuinely grateful, I tend toward the irreverent (yes, it’s true) and I am inclined to believe my donor is foreign, so I am referring to my donor as Hans from this point forward. He has to have a name after all and I obviously have Northern European genetics. I do hope that I get to meet him face-to-face at some point. I’d very much like to extend my gratitude to him in person. Perhaps by zen, I’ll be talkin vis a German accent and very muscular – ve vant to pump you up!
Hans and Franz from SNL ... pumping me up with stem cells! 
One part of the plan at a time.
In the meantime, I’ve continued to terrorize Seattle as a tourist. The people I’ve met have been wonderful, all great ambassadors of the city. On the road, I’m less inclined to speak in glowing terms and that extends to the parking lot. So, today, instead of playing the alphabet game as I did during the last road trip I took with my sons, my ‘game’ was to spot the most egregious parking job. We came across three pretty good examples in short order. Being a tourist has been both bad and good.  Suffice it to say, anything to move me closer toward returning to life as I knew it, or at least as close to it as I can get, is movement forward. On the other hand, I’m facing some unpleasantness over the next few months, some of which will make me feel pretty durned sick. My sleep schedule will return to the erratic inpatient routine and I’ll get intimate with white-coated folks who are interested in how regular I am. This time, my middle-of-the-night conversations inside my head about mortality will have more gravitas, even though I have no intention of going down that path.
And yet…
There is much to be grateful for and much to look forward to and much to live for, even if it looks different than I had thought it would. It’s all part of the plan
Today’s music from Dan Fogelberg, appropriately enough, Part of the Plan
I have these moments
All steady and strong
I'm feeling so holy and humble

The next thing I know
I'm all worried and weak
And I feel myself
Starting to crumble

The meanings get lost
And the teachings get tossed
And you don't know what
You're gonna do next

You wait for the sun
But it never quite comes
Some kind of message
Comes through to you
Some kind of message
Comes through

And it says to you
Love when you can
Cry when you have to
Be who you must
That's a part of the plan
Await your arrival
With simple survival and
One day, we'll all understand
One day, we'll all understand
One day, we'll all understand

I had a woman
Who gave me her soul
But I wasn't ready to take it
Her heart was so fragile
And heavy to hold
And I was afraid
I might break it

Your conscience awakes
And you see your mistakes
And you wish someone
Would buy your confessions

The days miss their mark
And the night gets so dark
And some kind of message
Comes through to you
Some kind of message
Shoots through

And it says to you
Love when you can
Cry when you have to
Be who you must
That's a part of the plan
Await your arrival
With simple survival and
One day, we'll all understand
One day, we'll all understand
One day, we'll all understand

There is no Eden
Or heavenly gates
That you're gonna
Make it to one day

But all of the answers
You seek can be found
In the dreams that
You dream on the way

Thursday, August 1, 2013

This is Spinal Tap – or – The Calm Before the Storm

Most of my time as of late has been spent in having baseline tests run and meeting the new medical staff, learning the new names, asking all the questions I can think of as well as the questions behind the questions. I’ve managed to get lost in the massive Seattle VA Hospital and wandered into the Emergency Room after taking a wrong turn, much to the amusement of a nurse. And *why* do the doctors look so young? Did Doogie Howser, MD take a spin through here?

While waiting and in between procedures, I’ve been chatting up my fellow transplant patients. Some of the caregivers have proven pretty opinionated, but my compadres with PICCs and ports are, to a person, really friendly and great to talk with. With nothing more than a handshake and a name, we’re all old friends already. A few of them have AML like I do, but the different conditions where bone marrow transplants are the prescribed protocol keep it interesting. I can’t pronounce all of the conditions, or drugs yet, but I do see that, once again, I’m the young buck on the ward.
My transplant has been hard-scheduled for August 21, which means the doctors have to decide my treatment protocol within the next couple of days. Depending on who you ask, there’s reasoning for either the mini or standard transplant. Each has its plusses and minuses, each has a lot of unknowns, and certainly each has its risks. But both have the same end result: I’ll have a new immune system and a new lease on life. My level of anxiety has been ratcheting down some as my burning questions are being answered, but there are still a lot of unknowns in a procedure that reminds me more of art than science. It really is a pharmacological miracle.
Bone marrow biopsy #5.
Lovely, huh? Drill, baby, drill.
Yesterday, I finished up my baseline testing prior to the transplant. Despite having had a bone marrow biopsy just a couple of weeks ago, I got yet another one as well as a lumbar puncture or “LP” as it’s called in the business. You might also say … wait for it … this is spinal tap. Of course, the procedures were done back-to-back, no pun intended, or maybe so. After all, both procedures are done on my back and they were done within minutes of each other.  Talk about fun! They were a bit more liberal with the pain killers (yeah!) and they let my son take some up close and personal pictures that show lots of nauseating detail for those who like that sort of thing. The only thing I need to do is get my PICC line dressing changed on Fridays and I have classes I get to attend with my son so we know the process for caregiving. So now, with the transplant’s scheduling and my testing done, that leaves a lot of time between now and then which is essentially unscheduled. The advice from the medical professionals: go see Seattle.

So the doctor’s orders have just taken a really nice turn!
This is Spinal Tap! (and yes, this really is me)
I should start by saying that the first scrip from the doctor right after my biopsy/LP for the post spinal tap headache was caffeine. He even said that on some occasions, they can give caffeine intravenously. And to think, all this time I thought that clever bit of repartée was something I said when I was dog-tired. Nope, they apparently really do it! So, with my two sons in tow, we took that medical advice literally and interpreted it in the words of good Will Shakespeare (I know he said this, don’t ask me how), Get thee to a Starbucks! I had to make sure my boys were in no pain as well after all. Since I had a little residual buzz going from the Demerol, my pinch-hitting photographer son now got to also be my chauffeur. Versatility Я Us!
That’s not to say that some sightseeing wasn’t already in the cards, but now it was doctor’s orders. Over the weekend, I met up with some high school classmates and took the scenic water tour on Lake Washington and Lake Union replete with some incredible kebabs on the barbie and some chipotle jam that will be in my cart the next time I hit Costco (Muchas many thanks, Bill & Michelle!). We found a deal at the base of the Seattle Space Needle that got us in to a number of local attractions with a significant discount, so in addition to the Space Needle, we’ve gone to the EMP Museum, taken a cruise around the harbor, visited the Seattle Aquarium, took the monorail over and wandered around the Pike Place Market. And yes, we made a pilgrimage to the original Starbucks. We still have tickets for the Museum of Flight and/or the Zoo (we have to pick one) and the Pacific Science Center. The Chihuly Garden and Glass Exhibition looks interesting and is right at the base of the Space Needle, so we may try that out.
Cruising around Lake Washington (l to r: my classmate Bobbie,
my son Austin, and Bobbie's son Wyatt on Bill & Michelle's
boat, the Mr. B
It probably sounds like it has been a busy week and, to be fair, it has been. On the flip side of that coin, once the transplant conditioning regimen begins, there won’t be much of anything going on outside the confines of the hospital for a few weeks and then it becomes a matter of a long, slow recovery to the new normal.
If you’re a Facebook friend, you can check out the pictures here; if you’re on Google+, you should be able to access the photos of us obeying doctor’s orders here.
With the iconic Seattle skyline in the background,
we had a great day for a cruise around the harbor.
In a real sense, this feels like the calm before the storm. There will be a lot of pain, discomfort, and all around yuckiness in the coming weeks, so I’m really grateful that these days leading up to that time is filled with some good memories with my two sons and of the city where the procedure that will keep me alive was pioneered. Sure, there is still some anxiety there over the unknowns and let’s face it, there will always be unknowns, but with the help of friends and family, I’m shedding the extra blood pressure and remembering that life is good and laughter is important and that making memories is more important than accumulating stuff, even if life is tough, the jokes are cheesy and the stuff is pretty cool.
Be well, stay strong, and much love to you all!  Oooh! Shiny object! Uh, Ritalin®, anyone? OK…give me the toxic chemical goodness and let’s get on with it!
Today’s music is from Linkin Park – Iridescent
When you were standing in the wake of devastation
When you were waiting on the edge of the unknown
With the cataclysm raining down
Your insides crying, "Save me now"
You were there, impossibly alone.

Do you feel cold and lost in desperation?
You build up hope, but failures all you've known.
Remember all the sadness and frustration
And let it go.
Let it go.

And in a burst of light that blinded every angel
As if the sky had blown the heavens into stars
You felt the gravity of tempered grace
Falling into empty space
With no one there to catch you in their arms.

Do you feel cold and lost in desperation?
You build up hope, but failures all you've known.
Remember all the sadness and frustration
And let it go.
Let it go.

(Instrumental Break)

Do you feel cold and lost in desperation?
You build up hope, but failures all you've known.
Remember all the sadness and frustration
And let it go.
Let it go.

Let it go.
Let it go.
Let it go.
Let it go.

Do you feel cold and lost in desperation?
You build up hope, but failures all you've known.
Remember all the sadness and frustration
And let it go.
Let it go.