Thursday, May 24, 2012

A lot of stuff.

For those who know me, you know I am a man of many passions, many strengths and many emotions. To know me is to know where you stand with me, and to know my opinion of you, even if only to know I don't have one yet. Though tempered by my mind and my sense of justice, my heart is quite capable of the emotions of vengeance, wrath and fury, and I would be lying if I said I had not entertained such thoughts against several people in my life.

All that being said... I wouldn't wish the side effects of my Chemotherapy on my worst enemy. 

And even more... I wouldn't wish cancer on anyone either. 

At the moment I am just now recovering from what could best be described as "bug" with extreme gastrointestinal pain and "issues" more or less since last Sunday. Not only did my stomach hurt, but all of the signals it normally sends were screwed up all to hell. I had to learn (and am still learning in a lot of respects), and the signal for "gut wrenching nausea" now doesn't actually mean I am going to throw up. In fact, it means I need to eat something, or the pain is only going to get worse. And yes, let me tell you, that little fact took me a few agonizing days to sort out.

I've gotten a lot of pats on the back and support, from friends, from co-workers, and even from some strangers. As much as I appreciate all of it, I really have to tell you, there have been times where I just wanted to curl up and scream because there didn't seem to be any escape from the pain. I didn't, but Lord help me, how I avoided that is beyond me. You can say what you want, but even now, I am using strength that I frankly just don't have. The poetic would call it "divine intervention." Personally, I'm just ready to look up at the heavens and say "thanks."

Still, there are some thing that you might enjoy from my experience. Even though the suffering, there have been triumphs, joys and wonders. 

As you probably know, I made it into work on Friday, as much to my own surprise as anyone else. It turns out that that was fortuitous for me on several levels. 

First of all, when I showed up on Monday, I'll just say right out that doing anything was a struggle, the pain in my stomach, as well as the gas and a million other things just made work unbearable. My team flocked around me almost immediately, helping or offering to help. There was no talk of "until your better", or "how much work can you still do"... just "I've got it," or "No problem, how do you want me to handle this." The relief was enough to help me settle in, and start to figure out how to work under what is going to be a new "normal" for me. The hardest part for me was IMing my supervisor and asking for a reduced workload. Part of my core work ethic is carrying my fair share, so it took a lot for me to not only admit that I couldn't meet the bar, but the to say as much to a supervisor was doubly hard. To her credit, Jamie didn't blink, she reduced my volume of work, and told me to just let her know when I feel up to 100% again. I assured her that I wouldn't push this farther than it had to go, and she just waived me off. "I'm not worried about it, Cisco. if I were I wouldn't have said yes in the first place."

Tuesday was a lot like Monday... and in some way a little more punishing. When I got home that night, we went out to eat, and that turned out to be a mistake. Something in the salad dressing instantly declared war on my stomach, and I was in agony for most of the meal. I got up at one point and walked outside, on the verge of tears, wondering when, if ever, the pain would end. 

I don't know why, or what, or how, but in the end I wound up coming to a small realization. I could worry and cry and suffer over things that weren't under my control, or I could deal with what I could control, and just "man-up" over the rest. It didn't make the pain go away, or even lessen, but for some reason I suddenly felt like I wasn't on the loosing end of a fight anymore, like maybe there was hope somewhere closer than the end of the proverbial tunnel.

As it tuned out, hope, and a lot more was just around the corner. 

Wednesday started off like Monday and Tuesday had, rocky and painful. I muscled through the first two hours with resolve I didn't know I had. Right after my Break, my case mentor told me she was scheduling a "one on one" with me. These were individual meetings, and could range from anything from a pep talk to "you are doing your job wrong." I've been in a few, and had mixed results in the past, one of them I would even qualify as a firing squad. The moment I heard that, I jumped up and ran to the bistro to grab something to eat. I wound up with a western panini, and let me tell you.... not only did it hit the spot, but for the duration of my meeting, my pain was almost gone. 

Now, for the crux of the meeting, and the cool part. Carlen (my case mentor) sat down with me and started off by saying how glad she was to work with me. My worries of another firing squad were instantly gone, she was just doing her normal rounds, saying hi and talking to each team member in turn. She said how impress she was with me overall, and praised my work with customers, even the difficult ones. I point blank asked her if there was anything I needed to work on, and she said that while I can always improve, nothing in my stats or metrics was off base. Not only was I doing a good job, but she was noticing it. 

And then for the creme-de-la-creme. Carlin just casually added, "yeah, I even mentioned you in a meeting the other day."


"Yeah. We had a case mentor's meeting on Monday, and I got in there with all of the rest of them," [and all of the higher-ups on site,  I will point out], "and the first thing I said at the meeting was 'yeah, my agent Cisco just impressed the hell out of me.' and they were like 'why's that?' and I said "He just had surgery on Wednesday, and then chemotherapy on Thursday, and he was at work on Friday, working like normal."

What she didn't say, that I found out a little later was that of this room full of people [including the facility manager] mostly hadn't even heard of my diagnosis, so their introductions to it was not "oh he has cancer," but "oh yeah, he had surgery and chemotherapy, and yeah, now he's right back at his desk working."

While not quite the subtle "let the people who need to know know first" approach I was aiming for, in the end, Carlin's casual comment set the stage for my coworkers to find out all of the important parts right up front. 1: Yes, I am sick. 2: I still have a job to do, and by God I am going to do it. 

To cap the whole meeting off, she added that she consider my work ethic an inspiration, and was "impressed to hell" (her words) with how I was both handling the whole thing and dealing with the chemo. 

Believe me, I'm not saying any of this to self aggrandize. No, I'm saying this because one nagging worry I have with any job I do is wondering what the people "up top" think. I know I work my butt off, that's never a question in fact, but how much do they actually see, what do they think, what is their opinion. Wednesday I got to find out that whatever my shortcomings... the people who oversee me look at me and see an asset, and they see an asset worth backing  and backing up. 

That was the shot in the arm I needed to make it through the day. It still wasn't easy, not by any stretch, but for the first time since that phone call two Fridays before I was reinvigorated, and ready to push myself again. 

Also, as a side note, one of the perks we like to get at work is when customers e-mail our bosses to brag about how good a job we did. On average, I'd say our team pulls in one kudos letter per person every two weeks, with some averaging more. 

I pulled in two in one day on Wednesday, and no, I have never mentioned my condition to a customer. 

In the end, some people might want to call this week one for the "win" column. I'm not saying it isn't, but most people who say that haven't faced the type of situation I am. Pats on the back are good, but the don't do anything to alleviate the very real stomach pain when it's at its worse. 

I'm not keeping "wins" or "losses" right now. I'm living it, writing it down, and moving on. In the end, getting a pat on the back or praise from my boss is good. In fact it's wonderful. But it's not as wonderful as knowing that some day I am going to look back and say "I beat it!"

Monday, May 21, 2012


So, imagine a china cup that's been dropped from a 6 foot shelf, broken in 50 pieces, glued back together and sat back on that same shelf.

Yeah, that's me, more or less, right now. I'm real beat up, real tender, but still, I'm at work and working.

One day at a time, just about the only way to handle this right now.

Sunday, May 20, 2012

Sunday... so far.

Well, just a quick update...

This morning was kind of rough on me. More of the same with thee aches and pains and really upset stomach. But I managed to get some lunch down, and managed to grab a shower, and I have to say, I'm feeling much better. Still not 100%, but damned if I'm not 75%, and that's twice as good as I was yesterday.


Well, the nurses warned me that Saturday would be rough. The second day after chemotherapy is when the full effects are supposed to land like a ton of bricks. Well, let me tell you, they weren't joking. I woke up feeling like I had just been run over by a truck. Even with the anti-nausea medication I was on, the combined effects of the chemo and the massive dose of prednizone were a two sided attack on my stomach. I dragged myself out of bed so that I could watch "Thundercats" and "The Legend of Korra" with my wife and son.

By the time Korra was over, I felt like crap and retreated back to the bedroom, wondering how much longer I could last. Breakfast so far had been a bowl of reheated noodles and a few cups of fruit juice cut half with water. Lying in bed, I remembered that bananas usually settled my stomach, and the potassium couldn't hurt. It was a mental exercise to make myself eat. My stomach sure as hell wasn't interested in adding anything to its content, and my mind just couldn't decide if I was hungry or full, a direct side effect of the prednizone.

Startlingly, half an hour later, the worst of the stomach aches and the raging headache subsided enough that I was able to get up, and actually start to do some housework. I started with the kitchen, and after half an hour of that, I wrangled my son to help out.

That lasted about an hour before the fatigue set in and I crashed. I wish the rest of the day had gone better, but the sore stomach and the unpredictable/unstable appetite had me on the ropes most of the afternoon.

I was level enough to watch the Preakness race, and that was actually very exciting. But not long after I just felt like death warmed over and retreated for another nap.

Dinner was hamburgers, partly at my request because I knew I was light on protein today. In retrospect I think it was too much too fast, because I'd been fighting a bad stomachache all afternoon.

I guess the end note for today is that chemotherapy is not a foe to be battled lightly.

Frankly, it's hell.

Friday, May 18, 2012

Guess where I am.

This goes out to everyone who thought, suggested, worried, told, warned or flat out demanded that I was not going to make it to work on Friday.

I'm posting this from my desk, and its Friday.


Chemotherapy: Round one

Honestly, most of today was spent staring at the ceiling or looking at the inside of my eyelids. One of the drugs they gave me, and it was the one that took the longest, triggered an allergic reaction where my head and hands went red, and started to inch furiously. The answer was benadryl... and let me tell you, 25mg of that on an IV and I was in la la land in no time. I was on the verge of snoring by the time they racked the second batch of the stuff and hit me with a steroid to help suppress the reaction before starting up the drug again. I think I spent most of the morning in a content cat nap.

Before I go on, there are two thing I want to talk about. The first is the treatment room itself. the place is stocked with reclining chairs that just invite you sit back and take a nice long siesta. And let me tell you, that's what a lot of us did. The staff there were remarkable. Some of them kind of got on my nerves with their presumptuousness, but the nurse overseeing my specific care was absolutely wonderful.

Second, as you have probably already read about yesterday, I had a less than pleasant encounter. Turns out that the nurse who took the sample works for a pathologist's office, and not the clinic. Also, none of the nurses like her. The real eye opening came when the head nurse walked by and said, "but who told you about all of that?"

I blinked at her. "What do you mean, 'who told you'? I was there."

The nurse shook her head. "She gave you Versed, that should have wiped your memory of the whole thing."

When I originally wrote this post, I thought they had given me a pill, but after talking with my wife... I realized that it was an injected dose, several times more powerful than the oral medications traditionally given.

 Versed is given specifically to give patients short term amnesia around the time of a procedure. Ethically, they are supposed to tell you about it, but there enters the catch 22, if they don't remember, how can they complain.

To make the magnitude of that mistake clear, I locked eyes with the heard nurse, fixing her with a glare that told her how mad I was and said "five foot six inches, gray hair in a pony tail, about 140 pounds, hazel eyes, blue scrubs with a surgeons one-handed not on the right side of the top, running shoes, and the bedside manor of a silver-back gorilla."

The woman looked back at me with a slack jaw, realizing that she had just made two mistakes. The first was assuming that the drug had worked. I had just rattled off a detailed description of the nurse, too detailed to for someone under the effects of Versed to have recalled 20 hours later. The drug didn't work, and now she knew it.

The second mistake, and I think it took her a moment to put it together, was telling me that they had given me the drug... From that point forward, I made them name each and every drug they give me, a practice that I should have done yesterday, but didn't, the result of fatigue.

Believe it or not, I'm not overly upset over this mess. There is a quote in hockey that goes "no blood, no foul", they tried to cheat the system by making me forget how much the procedure hurt. It didn't work, and now they knew it. And more to the point, they know I know it.

If I see Versed in my chart one more time, there will be hell to pay, and not even a doctor's title will shield him from that mistake.

In any event, the day itself was actually dull. No dramatic moments, no major disasters, no me passing out. I just sat there and either slept, or talked. I took my laptop, but didn't get anything done on it, no internet either. My wife brought me lunch, and that was about the size of it.

The end note to the end of the day was a minor emergency. There is a drug they give that is so toxic that if they get it on your skin they have to wash it off quickly. As she said that, the injector broke, and sprayed lap with the full contents of the material, soaking my legs. The nurse started to rattle off how they needed to get those closes off of me quickly and how I need to wash my skin and what not.

I calmly raised my hand, halting her mid-sentence. "Hazmat level-1 decon procedures. No problem, I've got this covered." I calmly disconnected my IV line from the pump stand, walked over to an empty room and closed my eyes, letting my fire department training come back to me.

-pull shirt with hands, make sure to keep the front off of face in case of any contamination

-undo pants first, starting with belt or clasp, then fly, Let fall, only use hands if necessary.

- step out and inspect feet for any obvious cross contamination, assume anything below the stain is now contaminated.

There were three big red spot on my upper legs. I turned my head and asked for rubbing alcohol wipes, which the nurse produced instantly. It only took about three minutes to clean all the spots off, and the rest of my legs and feet. I was in a hospital gown in minutes, and back at the treatment table while the nurse threw my clothing in a bio-hazard bag. All told, I was rather invigorated by the whole thing, and I think the nurses were a little flustered at how non-flustered I was... but, such is life. I called my wife a moment later and made sure to tell her to bring sweats and a T-shirt for me.

I didn't feel half as bad walking out of there as I thought I would. I was sore, and tired, but that was as much as product of the surgery and bone marrow tap the day before as it was the chemo.

Anticlimactic to be sure.... but after the week I had, dull worked for me.

Thursday, May 17, 2012

A draw... a very painful draw.

Yesterday, Wednesday, started strong and ended horribly.

I arrived at the hospital for my surgery. The nurse at the front desk remembered me from last time and greeted me accordingly. it was a good way to start the day off and my attitude was upbeat from that point forward. it was a lot of the same prep and situation as last time, with the open biopsy. the drafty gown, the hundred questions, the talking to everyone... but this time I knew what to expect, and treated every conversation like a social meeting. Spirits were high, and attitudes were cheerful.

The first hiccup of the day came when my phone range 35 minutes before they were supposed to wheel we out to surgery. It was the cancer clinic; they couldn't send their specialist over to to the bone marrow sample at the hospital, I would have to get wheeled over there to do it. I was furious on two levels, the first was that I would be awake for that mess, and the second was that they were waiting until the last minute to tell me. I let myself dwell on it for a few minutes, then forced myself to deal with what I could change, and what I couldn't. The marrow tap wasn't happening here, time to move on.

My surgeon came in shortly after that, she heard from her nurse, who heard from the OR nurse, who heard from me, about the marrow tap situation. Amazing about that line of communication, you'd think that news would reach her from more official channels... but oh well. The moment she found out however, she grabbed my chart and said "How many pain pills do you want me to get for you?"

"You mean for after the surgery?"

"Officially yes. Unofficially, also for you after that marrow sample is taken."

"Oh" I said, following her logic. I was actually going to ask about that, but she was one step ahead of me, not that I am complaining in the least. We talked and agreed on a reasonable dosage and pill count.

So, the surgery went fine, they knocked me out and I woke up with a stiff neck and a mild headache, nothing I wasn't expecting. They even sent a nurse with a wheel chair to rolled me the 100 yards to the cancer clinic. God bless them.

Unfortunately, my good fortunes did not follow me.

Going in from the back of my hip, the nurse told me I would feel a bee sting. Well it was more like a hornet's sting... no... it felt more like someone has just stabbed me with a sewing needle. And that was the numbing shot.

The sample itself didn't just hurt... it was the most pain I have ever felt in my life. The sound of the needle pushing though the outer wall of my pelvis was audible in my skull, and painful beyond words. Evidently the only way to pull the sample off was to twist it. The nurse actually said "this is going to be like twisting a tree branch to break it off" just as she started twisting the handle on her sample bit....

It was all I could do not to scream. I balled my fists up as the image of her words combined with the wrenching pain in my hip. Mental and physical agony offering no escape.

The sample dislodged.... she carried it over to the try table and then said "Oh dear, this one is too short. We're going to need another."

Somewhere in there, while she was drilling into the bone a second time, she had the nerve, or the stupidity to ask "are you okay, are you in too much pain?"

On my side, my back to her, my fist balled, I bit down and snarled before finally saying "I was asleep less than two hours ago, in an operating table. You want to know how much pain I'm in? I'm in more pain than I should be."

"I know, dear," she said patting me on the shoulder "They actually offer these as sedated procedures in the city and in Tulsa, just not here."

I'd like to say that I don't know what force kept me from hitting her, but the fact of the matter is that I do. Without a sample, the clinic won't proceed with the chemotherapy. It's that simple. Because of a doctor's bad choice of words (He said, "it doesn't hurt that much), and a too-long wait to get answers (the previously mentioned phone call), I was left with a choice; I could endure the rest of the pain, pain that surpassed any other experience I had ever felt thus far in my life, or I could delay treatment, possibly by as much as two or more weeks.

I chose to accept the pain, but I am still having nightmares over it today.

When it was done I was in agony, it hurt to walk, it hurt to move, it literally hurt to think. My wife raced to Walmart to get the prescriptions filled so that I could get some relief. (No the nurse in charge of the procedure didn't offer so much as an aspirin for the pain, let alone a prescription, or any means of getting one).

I didn't blog last night because I was still in too much pain, even with the pain killers in my system, to sit down and write. I went to sleep mad; mad that I was in pain that I flat didn't need to be. Mad that my wife had to see me like that, and mad that the only reason I wasn't in more pain was because I, not the clinic that inflicted it on me, had the forethought to engage an MD and get a painkiller ahead of time.

The day started out wonderfully, with one of the best medical teams I have ever been exposed to in my life. But it ended horribly, with pain beyond reason, for no other reason that bureaucracy and stupidity.

I wanted to call this day a win because I came out of it... but even at my most ardent, I can't call it a win when I remember how much pain in was in.

I'm calling this one a draw, and just moving on before I say or do something I might regret.

But I do have parting thought, and this one goes out specifically to the pathology nurse.

"I'm not mad at you right now because I'm too tired, too busy and I have bigger fish to fry. But don't think I won't crush you like a bug if given the opportunity"

Tuesday, May 15, 2012


Today I had a PET scan in a mobile unit, a massive unit that rolled in on the frame of an eighteen-wheeler.

But that is not what I want to talk about, what I want to talk about is the conversation I had while waiting for my turn in the scanner. I was seated in a little alcove waiting for my body to fully take in the radioactive marker they had injected me with. I had been talking with the technologists for about half an hour when I hear the man say "And how are you doing Mr. Sanders?"

From next to me, on the other side of a partition, I heard a voice, a slightly raspy, slightly weathered voice reply back, "Oh, I'm doing just fine."

Feeling a little guilty for talking all that time and more or less ignoring someone else, I seized on the information. "Sander's is it?" I said jovially.

"It is." The man replied.

"And how are you today?"

"Oh, I'm doing just fine." He said.

And so the conversation got started. You see, it seems that Mr Sanders was born in California, grew up there, and worked for the CDF back in the 60s and 70s as a wildland's firefighter.

I know the skill set it takes to do that job, and I know that the men back then had it even harder, and many times faced even uglier challenges than the crack, highly trained, well equipped teams we have today. These were men who were a breed apart. As a former firefighter, this was very much like sitting next to someone who had been at D-Day, or Inchon.

it turns out that he was a nozzlemen (The CDF operate an impressive fleet of pumpers and tankers to support their front line hot shot crews), and then a driver and then a captain, not a small accomplishment.

He moved to Alaska in the 70s, joined the Fairbanks Fire Department there, and was a municipal firefighter and EMT for years.

I don't know when he moved to Oklahoma, but I do know that he was diagnosed with cancer some time back, they did surgery to remove the tumor, and then chemo to hold the condition at bay. Despite all that, it came back, and evidently came back strong, because he said the relapse was a little harder than they were expecting.

On top of that, his wife had just passed away two months ago.

But you see, that's the whole point of the story. he wasn't there at the PET scan to chart his treatment or evaluate a tumor. He was there as a one-last-stop followup after his last round of chemotherapy a few weeks before.

This is a man who has lived the life of a hero. He's worked hard, he's lived a long and prosperous life, and he's survived not one, but two bouts of cancer. If anyone has earned the right to a hero's retirement of lazy days and cold drinks, this man had. When I saw him, his face had the lines and weathering that only age can bring, and he had a lot of it.

But he wasn't done yet.

You see, in three days, he's moving back to Alaska so he can move in with his daughter. She's a single mother, and he want's to go and help raise his grandchild. He said the trip up there will take him nine days.

I've been told that my attitude about all of this is, or might be an inspiration to others. I don't know, I feel like agreeing with that outright makes me sound conceited.

But you want to know what inspires me?

Heroes inspire me. And where I come from, heroes don't have utility belts or capes. They're people who press on, who accomplish, who live, who love, who learn, who adapt... and most of all, they never quit, because its in their makeup to do these things. They do them because that is what they do.

Two careers as a firefighter, a father, a husband and a cancer survivor twice over, and no sooner does he have it beat than he's back into the fray, helping to raise his grandchild.

I sat next to a hero today. A hero who survived cancer. He's not a hero because he survived cancer, but I'm willing to bet that he beat cancer for a lot of the same reasons that he was already a hero.

Rough start

What a way to start the day off.

It turns out that the truck carrying the portable PET scan unit has broken down about two hours away from Stillwater. The bad news is that we currently have no idea how long its going to take to fix the truck. The good news is that the scheduling nurse at the hospital just told the company that she didn't care if they had to send a second crew out, if the truck makes it out here at all, at any time, we were going to press forward, including a midnight run if need be.

Going to be a long day... but at least the right people are pulling for me this time.


Well, what was going to be a moderately productive day almost got turned into an unproductive day.

As I mentioned above, the PET scan is still in limbo thanks to some mechanical failure on the part of the truck that carries the thing. Also, the clinic decided to arbitrarily reschedule my chemotherapy training to Thursday, the hour before the therapy itself. Leaving me with a whole day off for an EKG... and having had one in the past, I can tell you that they take 30 minutes, and 28 of that is getting ready. No, I'm not kidding, my last one needed 90 seconds of telemetry from me before the tech said "all done".

So... I called the clinic and asked about my class, that's when I found out that the training had been arbitrarily moved. I asked about moving it back to today, and they were resistant, saying "no no, Thursday is fine."

[I'm actually leaving some parts of this conversation out for "practical" purposes. Just saying]

"Um... no, actually. Its not fine." I said back. "Now when do you want me to come in, today?"

You could hear the light bulb hovering over the woman's head turn on, even over the phone. "Well, um, how about 2:30 today."

I smiled. "That would be wonderful, thanks."


And... we're back on. Looks like the company that runs the mobile PET scanner managed to fix the truck. So now, we're back in the race. The time is for 4:30, and I've had breakfast. No food after 11, so I'm all set. I really have to had it to the scheduling department over at Stillwater Medical Center for managing this so well. Even with very little in their control, they kept people informed, and I think that goes a long way in these types of situations.

Monday, May 14, 2012

Res ipsa loquitur

There is a phrase called "Res ipsa loquitur". Though most commonly used in the modern legal system today, I use it every now and then because artistically, there are situations where I feel that it just works. Translated from Latin, the phrase means "the thing speaks for itself". In simple terms, its a way of saying that something needs no explanation, or elaboration. A normal person during the course of a normal day should, and is expected to, recognize this item for what it is on face value. 

I think that emotionally, this post is best titled "Res ipsa loquitur".

Sunday, May 13, 2012


Its okay to laugh.

I'm about to loose all of the hair on my body, and guess what... the first thing I thought of when I heard that was "Hey, that's $14 a month in shampoo I won't have to spend."

When I first heard the list of side effects from the five drug combination they are going to hit me with, I ran some numbers in my head and went "Hell, I'll make a killer zombie for Halloween this year."

When the Doctor told me I had the most aggressive form of Lymphoma, I said out loud "Of course I do, why should my disease be any less obnoxious than I am?"

In less than twenty four hours, I'm going to shave my head and hopefully Youtube it. For those who know me, you know I have a huge scar on my head that has been constantly described as a Klingon head ridge. I've never actually seen this before in my life.... no one has. And you know, I'm actually looking forward to seeing it. I think part of this whole cancer process for me is just it being an excuse for me to do something I could never do before.

I have cancer.

But I am not letting it take one thing from me, or my family. Every inch it wants, it will need to earn, step by step, the hard way.

And part of that is humor. I'm going to joke, I'm going to laugh, I'm going to do everything I can to keep my spirits up.

Because when I stop laughing, it just won another battle in this war.

Humor is part of life, and as such, it is part of this battle. Tell the jokes, ask the funny questions, smile, laugh, tell stories, remind people off my best times, and my not so glorious moments.

But whatever you do, don't stop laughing because we're talking about me having cancer.

When you do that... it's one step closer to winning.

Doctors, Nurses and Scheduling.

Note: Some of the links below connect to another blog I maintain, that chronicles my activities with a medieval organisation called the SCA. You're welcome to read either blog, but for those of you who don't know me though the SCA, talk of "kingdoms" and "Heraldry" might prove a hair jarring. 

Wednesday was an interesting day, but in a good way.

I met my Oncologist, Dr Jaan. He's a slender man with light copper skin, and short gray hair with a hair line that had long ago reached the summit of his head and was on a slow but steady ride down the other side. The name and the accent pegged him as eastern meditation or middle eastern. His pencent for cramming three English words in one syllable didn't discourage my guesstimate either. 

The news was as interesting as it was startling. As it turns out, I have one of the most aggressive forms of Lymphoma, and also has it turns out, this is a good thing. If I had stopped to think about my high school biology, I probably would have understood that a little better in the moment. "Aggressive" cancer means that it is dividing constantly, scientifically, it's in a near constant state of mitosis, or cell division. Cells are particularly vulnerable to intervention in this state, which is why the most aggressive types of Lymphoma are also the most receptive to treatment. In short, the "other guy" was burning the candle at both ends to try and kill me, and in doing so, he was leaving himself open to a hell of a counter punch. 

The counter punch, in this case, would be a five-drug cocktail. One of which is supposed to be an extremely effective drug at reducing tumor sizes.... the only catch, it can also cause hepatitis, especially in people who already carry a dormant virus, like I do. So, guess what, we just included a hepatologist in on this little party. I haven't even heard the man's name yet, but at this point, what can I do, and what can he do? I know what we'll wide up doing, we'll wind up monitoring the hell out of me while I go through chemo. 

Then Dr Jaan got to learn a little about me. He said that we needed to schedule a port placement with a surgeon. I grinned and said back "Already on the books; Wednesday of next week." The older man started, obviously not used to being anticipated at that level. The fact of the mater was that the second my surgeon called me with the results of the biopsy, she made sure to schedule me for a port placement, knowing that it would be a critical step in getting me treatment. By the time the previous Monday had rolled around, she already had me written in, she just needed word from the oncologist's office that a port would be needed. I'm not even entirely sure she waited for that before calling me, but hay, I'll take proactive over lazy any day. 

Then I found out that PET scans are critical in Cancer treatment, and yes, I would be getting one next week. There went Tuesday and Wednesday of next week. 

Then, I got to stand up for myself yet again. Dr Jaan said they also need to do a bone marrow sample and that they can do it there in the clinic. I'll have to schedule a day off of work and the nurse can take the sample...

"Hold it!" I cut him off. "I'm going to be out cold and butt naked on the operating room table this time next week. How about you try drilling holes in me then?"

I wasn't expecting his reaction, but I wasn't displeased. The trim man smiled widely with a bit of astonishment in his eyes. "Hey, that's a great idea!"

"Yes, I think so too!" I agreed eagerly. "That's why I'm suggesting it."

"Outstanding, I'll call the surgeon right now and see if she can arrange that." 

And, ironically, that was the end of the meeting. 

When I got out of the office, I was intercepted by a nurse who calmly handed me my schedule for next week. Like a student being handed a class schedule, I was calmly informed that I would have Chemotherapy training on Monday, the Pet Scan on Tuesday, Chemo Therapy on Thursday, and an EKG on Friday. Add in the surgery on Wednesday, and everyone else had just volunteered 40 hours of my sick time, and taken a complete week of work. That idea wen't over like a lead balloon, and I wasn't shy about putting that sentiment to words. 

"Why is the chemo class on Monday?"

"We wanted to make sure your scheduled was clear so we set it then." 

"How long is it?"

"About an hour"... in the middle of the day, no less. 

"Lets move it to Tuesday. And the EKG test... lets move that as well. Also Tuesday."

"Um..." the nurse said blankly, "I'll... I'll have to call the hospital and ask them if they can do it." She kept staring at me, obviously expecting me to relent. 

I looked back with a mirthless expression as I pulled out my phone. "Would you like to dial them, or shall I?"

She blinked, then in a classic "light-bulb" moment, she realized that I wasn't kidding and I wasn't going to take "I said so" as authoritative, at least not here. She nodded and headed back to her office to make the phone call.

I wasn't about to wait for that phone call to finish to reclaim the rest of the week. I went back to the front desk and walked up to the scheduling CNA who sat behind the counter. We exchanged pleasantries, and I updated her on the my scheduling situation. "Now, how about this Chemo treatment... why are we scheduling it for Thursday? I'm already going to be here Wednesday and Tuesday."

"Yes," she agreed. "But you are going to need a clear schedule for this."

"How clear?" I countered. "I've already been told to write off five days of work, how about a reason why?"

"Well, we want you to have the whole day for the treatment."

"We want" was not the way to steer this conversation with me, and obviously this nurse hadn't gotten that memo on that.

"Duly noted. Now how about just telling me how long the treatment is." I have gone through major abdominal surgery before, and that only lasted 5 hours... I was seriously wondering how long it would take to apply a medication dosage."

"Typically, a treatment takes five to seven hours. We schedule it for seven and a half."

Now it was my turn to blink. "How in the hell much stuff are you pumping into me?" I blurted out.

"Enough that you'll need to be here for seven and a half hours." She didn't press the point, but left it where it stood. There is only so much point in arguing with specialists, and this argument was quickly amounting to a loosing one.

Some time later, the first nurse returned saying that she had scheduled the EKG for Tuesday, but she still would feel better if I came in on Monday for the class. Something about needing to have a day free of distractions. Considering that I managed to graduate from a four year engineering college, I was totally perplexed at what could happen to me that would cause me to forget an hour long class. I also really had to wonder how low an opinion she had on my information retention capabilities.

"Duly noted," I said calmly. "I'll see you on Tuesday." And then turned and walked out before she could argue with me any more.

My next stop of the day was my Surgeon, Dr Pentz. This is the same woman who had called me the Friday before, terrified that she was going to leave me in  a depressive tail spin. I don't know how old she is, the mannerisms, and the attitude mark her as my generation. On top of that, she's currently walking with the slightest bit of a waddle, the after effect of delivering her third child. In fact, when I had to call and talk to her the Saturday before, our conversation was marked with her turning and shouting "would you two sit down and shut up", obviously trying to keep her older two polite. She apologized to me twice before I laughed and said "I'm a parent, Dr. I completely understand."

Today would be just a hair different. I was sneaking in off the books, a momentary visit to huddle and plan things, to catch up, and to talk. I would be at the mercy of her schedule, but I was glad to wait as long as it took. As it happens, the wait wasn't long, and a moment later Dr Pentz, clad in surgical scrubs, hustled into the room, her nurse in tow, proclaiming she had a grand total of seven seconds to talk to me.

Her words were stern, but her face said that she was glad for the opportunity to coordinate. I raced through the oncologist's visit, highlighting the facts. When we got the part about the cancer being aggressive, but highly receptive to treatment, she gave me a high five.

At the time, I don't know why that stuck with me like it did, but in retrospect, I understand now that I have never had a doctor engage me as an equal. There is always something aloof, and distant about the profession, even when I was a child. Pentz was different from the word go. When she first saw me three weeks before, I was still carrying the memories of my last encounter with surgeons, and was none too happy with them. I openly chastised her by saying "Let me just make this clear up front. You advise, I decide, and you don't make any decision for me. If that's a problem, say so now and I'll find another doctor."

And to my shock at the time, she clapped her hands together, smiled and said "Oh, good! Finally a patient who understands how this is supposed to work. I think we're going to get along just great."

In that moment we'd forged the beginnings of the respect that some others in her skill set had evidently not bothered to prioritize. She knew I would want answers and not placation, explanations and not patrimony. I wasn't to be talked down to, or talked around. I was not to be left out of the loop, but would be brought in, educated, and consulted on all decisions. Mine was to be an educated, active role in my medical situation, at least with her, and that I am still forever greatful for.

Once I had brought her up to speed, we briefly outlined the game plan for Wednesday's surgery. Gladly, we were both on the same page, but for me it was good to state the obvious, I have too many "misunderstandings" in my background with it comes to medical decisions.

The last thing I did before departing was to tell Pentz, in no uncertain terms, that her decision to tell me about the lab results on Friday was the best thing that could have happened. By telling me, I was giving the opportunity to tell a large swath of my friends many of whom face to face, about the news. I was given the chance to face this thing with my friends and family rallied around me  supporting me, and ready. No better decision could have been made, and I told her that her call was the right one for all those reasons and more.

I walked out of the office, glad for the huddle, glad for the confirmation that things were what they seemed.

I still had a busy week ahead of me;

Monday, I was going to work, and having a coworker shave my head. For me. You see, if I'm going to loose my hair, then I'm going to do it on my terms. I won't have my son watching me shed in a sickly and drawn out fashion. This way, I am in control, I call at least that shot.

Tuesday would be the PET scan, an EGK and my Chemo class.

Wednesday would be surgery, where I would have my port put in and a bone marrow sample taken.

Thursday... Chemotherapy... all day.

Friday... back to work. I can't tell you how many people have told me "Oh no, you'll call in sick on Friday. No one wants to work after a day of Chemotherapy."

And all I say to them is "We shall see."

Wednesday, May 9, 2012

The start of a weekend.

 My weekend of May 4th, more or less began at 4:30 Friday, when my
phone rang. I was at work, staying late to wrap up some loose odds and
ends. I looked at the phone and saw the number. I knew who it was, I
recognized the extension. When I put it to my ear, I recognized my
surgeon's voice. Three days ago she had performed the open biopsy on
my leg. The large sample was taken in order to try and help identify a
fast going lump that a needle biopsy had failed to ID two weeks

I wasn't expecting results yet, we were all braced for a two to three
week wait. But news had come early.

"And the news isn't good," she said. It was cancer, specifically Lymphoma.

"I'm sorry" she said, but I cut her off before she could elaborate.

"Don't apologize." I said firmly. "This isn't your fault, and you've

already done more, and behaved more honorably than many who came
before you. You did you're job, and there is no need to apologize for
that that." I wasn't mad, but my first instinct was that I wasn't
going to survive on sympathy. This was Cancer, a disease that we
don't even fully understand the cause of. There was no blame to be
assigned, so getting mad wasn't going to help me any more than apology
from the doctor.

The surgeon promised me that she was going to get me referred to an
oncologist as fast as possible; I should expect a call Monday morning.

Even in the regretful tone in her voice, I hear the resolve that told
me she would back that up, my cause was in good hands for the moment.

The first people I told were my supervisor and coworker, a choice
based on happenstance; they were there when I hung up with the doctor.
Jamie had overseen my whole team at Dell since our first week of
training, and knew that I was dealing with an unknown (even to me)
medical issue. Robbie and I were classmates with a shared background
of corrections and emergency service. Two barrel-chested titans with
enough in common to bond in true explosive male fashion. Now we were
team mates, on the front lines of Dell's ongoing struggle against bad
parts, lazy customers and any other disaster that could befall a
modern computer.

I called them into one of the conference rooms, both of them bewildered at
my grim-faced summons.

I remember distinctly understanding the phrase "someone walking over
my own grave"  in a whole new way when I said the words "its cancer"
to them. It’s not that I thought I was going to die. Far from it, my
decision to fight was codifying even then. But for the first time in
my life, I was realistically looking at a challenge where defeat
literally meant death. The stakes of this game had just been set, and
it was my life on the betting table.

Jamie was in an interesting place, a manager locked into the strict
rules of confidentiality and legal red tape. But still, she'd shown
already that she was ready and willing to go to bat for her team, and
I knew I would need that in the months to come. The look on her face
when I told her the news rather exactly mirrored my own emotions. I
suppose we all knew the possibility existed; but so does getting hit
by a bus, and that doesn't make the event any less devastating.
Perhaps the most oddly comforting words that day were when she said to
me "You do what you have to do, I'll take care of scheduling."

Robbie had the type of pain in his eyes I long ago learned to call a
"warrior's ache". He, like myself, is a man built, body and spirit, to
confront an adversary head on. Had we been pedestrians on a dark
street, suddenly confronted by a mugger, there's no doubt that Robbie
would be ready to charge if it came to it. But here, violence offered
no answers, leaving people like us with only support to offer. He
offered that, and I knew that if asked, he would move heaven and earth
at my request.

In the end, I told them both that while my medical history is nobody's
business but my own, the reality of the situation would become
apparent to anyone soon enough. I told them both "Look, obviously I'm
not looking for advertisement, but if someone asks an intelligent
question, please, don't insult that intelligence." I guess in the end,
it little more than permission to verify the obvious I was giving
them, but still, I wanted to offer some assurances, some protection
from the mountain of legalities and technicalities that hang over
everyone's heads these days.

As Jamie and Robbie filed out of the room, I pulled out my phone to
tell my spouse. Ever since our days as a dating college couple, she'd
referred to me as her "better two thirds", in reference to the fact
that I was almost literally twice her mass and a full foot taller than
her. Meggan's strength has always been a matter of quiet resolve that
feeds off of my own titanic emotions. Together there was little that
could shake us.

But today we would not be together, at least not the way we always
were. I wouldn't be there to hug her and hold her as she processed the
news. There was no model for this event, no way for me to know how she
would take it. I dialed the phone, heard her voice and just said it.
"I heard from the doctor, it's cancer."

Had our roles been reversed, I don't even think I would want to guess
how I would take such a statement. A threat of any type to the woman I
have decided to spend my life with would put fire in my heart, and
possibly break my spirit outright.

But in the moments following, I heard the type of quiet strength that
even now can't fully understand. "I understand." she said calmly. "You
do what you have to do there at work, then come home so we can talk. We
will get through this just fine, dear." She said the last like she
was explaining to a child that she sun would indeed rise in the east
the next morning. The quiet assurance of the given, the strength of a
wife's resolve that dares even the strongest of specters to challenge
her. Even now, days later, I don't fully understand how it is that she
can be this strong in the face of something so scary, but she is, and
I all the more grateful for it.

There was one more person I wanted to tell. When my team first hit the
floor after training, our coach was a soft spoken, but earnest and
sincerer black man named Taurrie. He'd left his mark with consistent
pressure, kind words, enthusiastic praise and honesty. Since then, the
coaches were shifted around like an administrative game of musical
chairs. Still, the friendships formed in those early weeks held fast
for some of us, and in the months and weeks leading up to this, I had
sought council and conversation with Taurrie as I patiently waited for
modern medicine to name my ailment.

Now that the news had come, I owed the man a face to face statement.
In true Taurrie fashion, he received the news with true quiet resolve
and returned the effort with quiet strength in his own words of
support. It was what I expected from the man, and I wasn't really
surprised to hear the words, but that the same time I was glad for
them. he asked if I was going to be okay, obviously asking how I would
do over the rest of the weekend. I told him I would be fine, honestly
I don't think I know how to "lose it" under pressure. I may well make
bad decisions, but I'm not going to just snap and run around like a
crazed person.

Still, one thing nagged at my mind; how was I going to tell my six
year old son?

I'll never forget Taurrie's answer for as long as I live. "Well,
here's what I would say. I'd sit him down, and tell him that daddy's
sick, and the doctors are going to make him better, but it’s going to
be a lot of work, and take a lot of time. And what Daddy needs you to
do to help him out, is to find something new every day that will make dad smile."

For the first time since getting the word half an hour ago, I finally
had a way to engage the youngest member of my family with the hardest
news I had ever gotten. My wife already knew, and I knew that soon the
rest of my friends and extended family would know as well. I knew deep
down that attitude would be a huge part of this fight, and behind
that, support of friends and family.

By the time it was all said and done, I walked out the door around
5:30 that afternoon. I was still shaken, still scared and still
completely unsure of what I was going to do when I got home. But at
the same time, I knew that hope was not gone from the situation, and
that if nothing else, I could count on my friends, and my own fighting spirit, to press
through to the end of this.

Even in the darkest of hours, hope was there for me.

Friday, May 4, 2012

One more hat

In 33 years, I've worn a lot of hats in my life. I've been a Cub Scout, a student, and a brother. I've been a son, a cousin and a nephew. Later on I became a fire fighter, something that even to this day I am fiercely proud of. Later still, I became a boyfriend, and a year later a fiance, with the title husband to follow. I'm a college graduate who's been called an security officer, a engineer, a director and a department head. I've been a podcaster, journalists, photographer, mechanic, landscaper, and carpenter. Recreationally, I've been a Shieldman, pikemen and one time commander, and even now am a bard, apprentice,  lord, and herald. Presently I'm a father, husband, amateur author, computer tech and overworked commuter, but that last one is nothing new. 

And of course, though it all, I've been a friend to many, and called many my friends. 

But today, I was told that I am going to be putting on a new hat, and have a new title. You see, its not a club most of you want to join, but I bet most of you probably show its members a lot of respect. Truth be told, I know three candidates myself, two got in, one didn't. None of them originally wanted to get in, just like I wasn't looking for membership. But, circumstances change, priorities alter, objectives adjust themselves, and now that application is really importantly. I'm told I've got an excellent chance of getting in, the reviewers say that its better than 75%, but the application still takes time. Mine's probably going to be in process for at least six months before the final exam.

I kind of wish it came with a card, or a hat, or even a pin. No such luck. This club doesn't normally bother itself with frivolities, but then again, for most of it's members, getting in is enough. Looking at it now, It's probably enough for me, it's not like the application process won't be memorable by itself.

Today I turned in my first application, hopefully in six or nine months, they'll let me in.

Then I can call myself a lymphoma survivor.