DAY 33: Platter of platelets...

Thursday morning started with an 8am appointment at the Emory Clinic. I had high hopes that it would be a quick in-and-out (meaning we'd be home by lunch), but I was proven wrong. Wasn't the first time and won't be the last! Funny how we set ourselves up for a let-down ONLY when we have an agenda of our own. If we have no expectation, then there really is no disappointment.

Got my arm pricked for the 176th time for a blood draw. I had Alfreda again. She goes by 'Freda'. Freda is a good stick. I am starting to develop relationships with the Pflebotomists. Who'd-a-thunk-it? If I don't think I'm getting any IV fluids or am not scheduled for any IV chemo, I usually don't ask them to access my chest port. That hurts a whole heck of a lot more than a simple arm prick. Too bad I didn't have my crystal ball with me this time.

We then went across the hall for a consult with a nurse practitioner. This usually involves a whole lot of waiting. We ended up seeing one around 11am. The lab work confirmed that my WBC count was decimated (0.3) and therefore I am in the neutropenic stage of the cycle. Through the usual battery of questions, we decided that it probably would be prudent to get a bag of platelets that day. I had been dizzy and light-headed, having chronic nosebleeds, and my platelet count was around 30 (as compared to a low end of 'acceptable' at about 50). I was also most likely dehydrated. I try to drink fluids all day long, but there really is no comparison to getting a bag of saline directly into the bloodstream. So it was time to wait some more.

To pass the time, we went to the Patient and Family Resource Center within the building, and I looked over some Lymphoma books and read some testimonies from other cancer survivors that made me cry. (I seem to well up very, very readily these days. Again, not something I mind. In fact, I hope this folly stays with me.) One concept that was particularly memorable was that one becomes a cancer survivor upon finding out he or she has cancer, not going into remission. So, for me, I would say, "I became a cancer survivor on November 19th, 2008, when I was diagnosed with Aggressive Burkitts-like Lymphoma." I don't know. For some reason that made me feel more tangibly like I could beat this thing -- and that I probably already am.

After our buzzer buzzed, we went back down to the infusion center (the Land o' Grady), got our vitals taken again. I was a fall risk yet again due to my light-headedness, and got the little red sticker on my arm band indicating such. My blood pressure has been low due to my anemia (low RBC/hematocrit)... around 100/65.

We went to our chair and then waited another hour for them to get my paperwork in order. See the theme here? We met a very kind nurse and she gave me some topical lidocaine creme before they accessed my port. Guys, the needle is 3/4" long that they stick in your chest! Right through your fleshy tissue. So this time it wasn't as bad as in the past. Thank you, ma'am.

We sat there for 2.5 hours while the saline and platelets were getting pumped into me. Platelets, which are about 1/10th the size or normal cells, help your blood clot. Hence, my nosebleeds should abate. They are a pale yellow color and the bag looked like a lemon creme sauce.

After the bag of platelets emptied, I started to get a weird sensation on the back of my thighs. Itching. It got worse. And then worse. I tried to scratch a little and then put it out of my mind, but I wasn't so skilled. I then got red bumps all over that area. Then it spread to my arms. It was HIVES! YES! The nurse said that often times people have an allergic reaction to blood products. I got a Benadryl pill and things got better over the course of the afternoon.

We left Emory and got home around 4pm. Wow. Another 'full' day fighting cancer.

One thing I remark on every time I am sitting in the Clinic waiting room is that human sickness is indiscriminate with respect to so many things we typically see as differentiators. It's a great equalizer, or sorts. There are people from multiple races, nationalities, genders, ages, and levels of monetary wealth -- all sitting together in one waiting room, wearinng the same silly armbands, all hoping for the same thing: wellness.

I like to study people intently as I sit there. I note who the patient is, and who the caregiver is. How might they be related? Are they there alone? Do they look like they are in pain? Do they have their hair? Why might they be there? Have they been coming a long time or are they newly-diagnosed?

The rich and the poor, the young and the old, the white and the black and everyone in between, the well-prepared and the ill-prepared, the ignorant and the enlightened, the judicious and the carefree... all somehow got sick and are all sitting there, trying to fix what's wrong. We're not macroeconoic statistics that describe incidence rates and remission rates-- we are all just individual people trying to be healed and live and long, healthy life.

DAY 29: A beloved aunt and uncle...

Just so you know, when I'm in the hospital... it's not like I'm spending hours upon hours on the computer each day, and deciding as a matter of convenience of motivation whether or not to post an update. It just ain't like that, homey. More realistically, if I have the aptitude or coherence to log on, usually that little capacity is solely directed and posting an update in some form or fashion. So a decent barometer of my level of awareness and stability is the frequency of updates.

Which leads me to this morning. I am clearly due for an update. I feel stable enough -- and so here we go.

The brain surgery went well but the recovery wasn't so smooth. I got really nauseous and vomited several times on Thursday afternoon. They tried to get it to stop, only to resort to a morphine and ativan injection to knock me out. Blah. More grogginess ensued. I got a stabbing headache (the kind you'd feel if someone had drilled a hole in your head?). but I am pleased to say that it has largely not returned since. The 19 staples will stay for 7-10 days and then will come out. Cool. Another scar to talk about! I like scars because they are another reminder that we're imperfect and human and don't need to hold our bodies to such high aesthetic standards as we sometimes do.

So I had chemo, brain surgery, and then went right back to the chemo schedule. On Friday evening, we were told that we could go home when the Methotrexate levels had cleared my body (<0.05). On Saturday morning, they were 0.14 which meant another overnight in Emory Hotel was unavoidable. Ugh. I just wanted to get out of there, so this was a bit deflating. Sunday morning, we were at 0.04 so I started to stage our escape. We headed home around mid-day.

While we knew it was coming, Monday morning we had to get right back in the car and head to the Clinic to get my labs checked, a Neulasta shot (an $8k shot to stimulate WBC growth), and also... drumroll please... my first intrathecal chemo treatment in my new resevoir. That's fancy phrasing for needle-injected brain/spine chemo!!! YEAH! Call the kids in! Just writing that series of words makes me feel sick.

When they tried at frist to stick the needle into my brain resevoir, no CSF flowed out... so they pulled the darn thing out. The guy said, "I'm gonna go get so-and-so, so she can poke you the second time. See ya!" Wouldn't it be nice if addressing lakc of successes in life were this simple to accomplish.

Charise, another NP, came in and a few minutes later had me poked and flowing. CSF came out, then chemo when in. Then lunch came out (of my mouth). I felt like my blood pressure went to half of normal and room started spinning. The throwing up lasted a good while... which gave the Emory folks time to grab a bag of fluids, stick my port, and get the IV pump going. I zoned out for about 90 minutes and slowly felt more stable.

I still have trouble walking, due to all the weakness and dizziness. MY RBC is low, which makes me anemic... which will cause symptoms like this. Also, the high-dose chemo for a week. That will do it, too.

So I'm back at home, after a 7 hour+ visit to the Clinic yesterday. It really sucks that I have to drag Candace everwhere with me and she can't really have a 'normal' day. She is such a thankless helper and never asks 'what's in it for me?'. What an angel. I am just so fortunate.

On to a story of a beloved aunt and uncle. Stan and Marcia Smartt.

Only recently has it has become clear to me what amazing people my uncle and aunt Stan and Marcia are.

Sometimes sowing seeds takes years upon years to sprout and take root. I think this is especially true with children. Over the past 30 years, this couple did so many things for me of which I am only now beginning to see the true beauty and self-sacrifice: driving across state lines to babysit, sleeping-bag camp-outs on their back porch, building model and radio-controlled airplanes, watching crazy old home movies, motivating me to get up on a slalom ski by a $10 double-or-nothing bet, teaching me (and my sister and cousin) how to fly a Cessna 172, teacing me how to fly fish and how to hunt (even if it did fortify my soft-spot for animals and dislike of hunting!), taking old Bumpy Jeep on off-road adventure rides, catalyzing my love for playing the drums (Stan is a long-time drummer, too), buying a ragged-out go-kart and letting me full-throttle it around the barn, always giving creative birthday and Christmas money scavenger-hunt gifts, educating me as a teen-ager about the time-value of money concept through a creative gift offer, introducing me to the truth that God has a plan and laws regarding how we use our money and resources, mailing an original card and letter every month for our first year of marriage,... and did this with an all-around craziness that implicitly gives one permission to enjoy life and laugh it up.

Stan's wife Marcia has the most compassionate and generous heart of any woman I know. She has artistic and creative gifting that shines so brightly. She also has a heart for others that is a paragon of empathy. She is a woman who you will talk to for over an hour, and only then realize you've heard nothing about her, as she has drawn you out and delved into what's dear to you the entire time.

While we don't see Stan and Marcia very often, they hold a place in our hearts that can never be replaced.

When I look at my niece and nephew (Candace's sister's children), I am often reminded of what Stan and Marcia have done for me and my sister.

I suppose the longer the seeds take to sprout, the deeper the roots are hence the less likely the storm will bring down what has grown over time.

Day 26: Needed this like another hole in my head...

Well I'm pretty much still down for the count from the brain surgery. The good news is that it's highly likley I'll still be able to play the drums and remember most of your last names. I'm pretty happy about those odds.

Just kidding... everything went well and I can sill smile, sign my name, and touch my fingers to my nose (and this is the battery of hospital tests that apparently offer insight into a successful procedure.)

In the interim, my wife has been able to post some great photos and updates at http://candacesmartt.blogspot.com and I encourage you to follow her blog as well, since she has a better (and often more candid) commentarty on this whole cancer journey. The direct link itself is at the bottom-left of this page.

I will do my best to udpate tomorrow, once my brain fires back up. I do have 19 pretty cool staples in my head that will eventually need to come out. I'm going to start the bidding at $19.99 for that honor if there is any interest.

Take care and we'll be in touch!

DAY 24: Quicker than you can say Benadryl...

I'm here at Emory as an impatient, on day 2 of round 2, and things are going great so far. I'm sitting up in a chair, getting the lemon-lime flavor today (known to the smart people at Methotrexate). I checked in yesterday and they told me it would be the early afternoon before they tethered me up to the infusion pump, so like any good parolee, I bolted from the hospital and had 'one last lunch' at my favorite taco place in the world. The cheese dip never tasted so good.

After lunch, we had a follow-up with a cardiologist about my atrial fibrillation episode during round 1. We got another EKG, which was thankfully normal. Our best guess is that it was a stress-induced event and it may never happen again. One thing I learned was that young people often go into atrial-fib when they exercise too hard or get their heear rate up relatively high. This was comforting.

Also, while my red blood cell count is depressed, I get a little flow murmur whereby the heart is trying to work harder due to the amemia. The sensation is as if you can feel your heart beating in your extremities, and see it visibly in your abdominal area, pulsating with each beat.

Later, in our room, the RN was getting ready to access my port. This involves sticking in the plastic/needle apparatus into my port on my chest -- twice, one in each side. She seemed to know what she was doing, until she counted to three, pushed really hard for a few seconds and then said, "Huh, that's not it." Then she pulled it out. I was incredulous! How could you miss it! She tried again, but preceded it with "I'm not 100%, 100% positive, but I think I know where to go." I said, "I'm ok waiting until we get to 100%, cause that hurt!"

Next, we received a brief consult from a cadrdiologist PA who told us a little more about what to expect from the sugery to implant the Rickham resevoir in my head. She said that they make a crescent-shaped incision in the right frontal lobe, pull back the layers of skin, bore a dime-sized hole through the skull, and then insert a straw-like catheter 5cm into my brain (through the dura mater). When they hit the appropriate ventricle where the CSF (Cerebrospinal fluid) is housed, it will, as she put it, "spew CSF everywhere", at which point they will cap off the straw with a small dome-shaped device that will sit against the skull directly. Then, they fold back the layers of skin and staple me shut. Simple as that.

I have decided to give it a shot, and I go under the knife first thing Thursday morning. As a reminder, this resevoir will take the place of the lumbar punctures (Intrathecal chemo injections) that I am scheduled to get twice per inpatient visit. We'll just put the chemo directly into my brain, ok? Seems safe. Well I guess if I have any unintelligent moments in my future, I have a simple excuse to proffer.

Last night, they gave me Rituxan as my first chemo du jour, and preceded it with an anti-nausea IV and a bolus (IV push) of Benadryl. I was sitting in the chair next to my bed when all this happened... and really wish I had been lying down in the bed itself. Once they push 50mg of Benadryl directly into your heart, it takes literally three seconds for you to fall out. "Ben-a-dr-zzzzzz...." I was hit by the proverbial Mack truck in a flash. Getting from the chair to my bed was just plain sloppy. The evening from that point forward was a fragmented jumble. From 8pm to midnight, I was in and out of the present. Darn-- and I really wanted to watch American Idol, right?

At midnight, we finished the Rituxan and got another bolus of the next chemo drug, Methotrexate-- which has the appearance of lemon-lime Gatorade. We had Orange Gatorade last time. At 1am, we got hooked up for a 23.5hr IV, also of Methotrexate. We also got a steriod that should've kept me from sleeping... but did not. Lots of action; constantly a nurse in the room -- hooking, unhooking, making me swallow pills.

I also give blood and and get vital signs checked every few hours. They check the pH of my urine every time, to ensure it's >7. They don't like to give you this chemo unless your kidneys are operating in an alkaline state. We've been hovering around a pH of 8.0-- which is where we want to be. Not a whole lotta privacy going on.

At 7am, I got a knock at the door, saying it was time to get a CT of my brain as preparation for tomorrow's surgery. I was pulled out of bed and taken down to another floor via wheelchair where I got the CT -- a very quick and uneventful procedure. Back up to the room to rest in bed until breakfast arrived: off-brand Rice Krispies ('Rice Crunchies') and chocolate milk.

Today has been just great. I have walked ten laps, spent some time with a few friends catching up, and been spending some quiet time with Candace. An uneventful day is a great day, in these circumstances.

Tomorrow will be an adventure. Please pray that the surgeons' hands will be guided where they need to go and that tomorrow, too, will be as uneventful as possible.

I am quietly reminded about the goal of focusing on the here-and-now. In this singular moment, life is happening... unfolding... and the story is being written real-time. Not just for me, but for you as well.

This is where all the good stuff occurs: it's not about yearning for some other day, in some other place, under some other conditon. We need not ignore today with the presumptive anticipation of soaking it all in tomorrow. Tomorrow, as with any of the future, is not real...yet; and it may never become. But today is and it's where our focus should be.

Day 21: A little birdie told me so...

A quick update and then a story. I am feeling pretty darn good these days. I am scheduled to check back into the hospital Tuesday morning for round 2 of chemo, which I anticipate will also require about a week of inpatient stay. This is a B-round, meaning it will involve some new chemo drugs (specifically Methotrexate and Cytarabine).

I also expect to have a surgical procedure whereby they implant an access point on my brain called an Ommaya or a Rickman 'resevoir'. I will tell you more about this later (as I don't know very much yet), but just know that it involves putting a line into my brain for direct injection/withdrawal of cerebrospinal fluid in lieu of getting lumbar punctures, which proved to be very complicated for me the first time around. Stay tuned on this point.

As for the story, I will try to keep it short and simple - as it should be. I was getting out of my car on Friday about to walk back in our house via the garage, and decided I'd take the chance to bask in a little sunlight and stroll around to the front door. Right as I came in view of our diminutive front yard, I saw something flutter in the corner of my eye. It was a little bird on top of one of our fenceposts. It was about 10 feet away.

I took notice because it was surprisingly close and just looked back at me with its beady little eyes. I was more taken aback when it hopped to the next closest fencepost, putting it about 5 feet away from me. It had come noticeably closer than most wild birds ever let us humans get. From this vantage, I could easily see the bright white lines on each of its individual tailfeathers, contrasted by a rich gray tones of its plume. Wow. It was a very stunning, ordinary bird.

I stared at it quietly, fully expecting it to flitter away once it noticed that I was present. But it didn't. We locked into a staring contest. We just stood there. A few minutes later, it dawned on me that 'my' dirt quite possibly served as this little fella's homestead, and he must be trying to thank me for paying property taxes on his behalf. He was squatting on my land. I was ok with it, however, as the grass was dormant, the bushes and trees were fairly unimpressive, and I'd be surprised if there was much he was able to harvest from our little slice of heaven here in the City of Atlanta.

At this point, I continued my stroll around to our front gate, and then down the sidewalk towawrd the front door... all the while giving thanks for all the life that exists around us, in so many seemingly inconsequential forms. At this point, the little dude (the bird), managed to fly right over next to where I was walking (again, about 5 feet away-- noticeable closer than normal). He tilted his fragile head up at me, and then abruptly stuck his little beak into what seemed to be frozen, barren earth.

That little sucker pulled out the longest, juiciest, freshest most alive worm I'd seen. Out of nowhere. I shrugged audibly. He savored every single bite of the squirming earthworm, until it was gone.

Despite not knowing much of the Bible, two 'bird' stories immediately came to the front of my mind. (I had to look up the specific scriptures, of course):

Matthew 6:25-27: "Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothes? Look at the birds of the air: they neither sow nor reap nor gather up into barnes, and yet your Heavenly Father feeds them. Are you not more valuable than they? And which of you by being anxious can add a single hour to his span of life?"

Matthew 10:29-31: "Are not two sparrows sold for a penny? Yet not one of them will fall to the ground apart from your Father. But even the hairs of your head are all numbered. Fear not, therefore; you are of more value than many sparrows."

That darn little bird finished his worm-lunch and proceeded to hop up onto a low-hanging branch of the small bush literally right next to me, adjacent to our front steps. He sat there -- awkwardly close -- and we locked eyes for no less than five straight minutes. Again I noted how intricate and ornate his coat was. Every feather laid on top of the next with a precision that no human hands could've orchestrated. He was not bothered by the bitter cold winter air, as I was. His stomach was full. He had found plenty to eat, out of the barren and near-frozen earth. He was not worried about what tomorrow would bring.

That second story goes onto say, "So everyone who acknowledges me before men, I will also acknowledge before my Father who is in heaven, but whoever denies me before men, I will also deny before my Father in heaven."

May the Lord of the heavens and the earth be glorified in all that I think, say, do, and am.

On the good days, I will praise Him. And on the bad days, I will praise Him.

DAY 17: Middle-age looks, thrust upon us...

Well there is no more mystery surrounding what I'd look like if I lost my hair at 50. In the span of about 24 hours, I've managed to age about 20 years. Looks pretty freaky, eh? I am reminiscent of a mid-1990s Billy Bob Thornton of sorts.



I received a phone call from one of my most beloved friends yesterday, during which he quipped, "You're at your house right? Good. So am I... so come on out." Let me also add that this is my one friend who possesses a most prized and lush head of hair out there. It's one of those heads of hair that is years in the making. In the span of a few short minutes, he had managed to level the playing field and consummate an act of solidarity and friendship that I will never forget.

DAY 15: Shedding like a cat... and thank you...

After Candace and I cross-towned to Emory at 2pm today only to learn there was a scheduling SNAFU on account of the Clinic and we'd be unable meet with an RN, we stuck around to have blood drawn and then headed out a few hours later.

The side effects du jour for me are persistent and unabated bloody noses (the steriod wears down the nasal lining), mucositis (ulceration of the digestive tract which feels like a reflux del diablo), and dizzines that just won't seem to abate. Overall, I think I am doing pretty darn well!

Courtesy a little divine timing, we just learned from Dr. Flowers via phone that my WBC has rebounded from 0.4 on Thursday to 9.8 today! Yee-haw! While my hemoglobin and platelets are still on the low end of average, they are not low enough to warrant a transfusion tomorrow. I am so happy to hear this!

I want to take pause to issue a well-deserved 'thank-you' for the many acts of kindness and gestures of support I've witnessed over the past several weeks since the fun began. Within days of being diagnosed, some dear friends of ours solicited interest among our community to gather a very creative collection of gifts that I will call "Open when you..."

Each of the gifts or cards came with a unique prerequisite, marking a milestone in the process that was notable for one reason or another: "Open when you start losing your hair", "Open when you feel too tired to exercise", "Open when you first miss work", "Open when you regain your appetitie", were just a few.

I've received some great hats (my hair started to fall out TODAY!), some gift cards to our favorite food spots, some great games and knick-knacks... as well as some thoughtful and kind words of encouragement. I am so very grateful for each and every one of these acts of love.

People have selflessly brought us homemade and take-out meals, vats of gatorade, Starbucks for Candace each morning, books, games, letters, cancer-mocking apparel, and have also just come by to be physically present for support.

What a great manifestation this is of the corporate, collective body of a community coming together as a whole to support a need within itself. While many of your have offered to help out and have yet to be able to do so directly-- rest assured that your time can and will come! I will surely lean on you when the road starts to get long and windy.

And for all of you who wanted a squishy teddy-bear to cuddle with tonight, I am attaching a rogue shot of the Emory Clinic MC, 'Grady', who was in full form today. Apologies for the low-resolution shot, but I think the effect comes across nonetheless.

DAY 11: Nadir is here... have no fear...

"Nadir" (noun- the lowest point; not the zenith). Is our Ralph Nadir here? While I thought I might defy the odds and pass through this round of chemo without a neutropenic episode, today was a bit of an education to the contrary. Since my White Blood Count (WBC) had increased from Monday to Tuesday, I naievely presumed that we would have no inflection points and it would be a simple trend upward. Uh-uh. Nope. Psych.

Today, the first thing the clinic nurse said to me was, "Well, we decimated your whites. That's what happens when we give you poison." She is so smart. On the order of magnitude, my count is 0.4, while a safe count threshold is north of 5. I guess I'm vulnerable right now to an infection of any sort, but the challenge is reminding myself that's the case. I'm a little stubborn.

My wife is the face-police. She hawks over every incidental hand gesture and yells at me when my hands come within breeze of my eyes, nose, or mouth. She has been on parrot-repeat-mode ever since, saying, "Don't touch your face. I saw that. You wanna get an infection? Huh?" I think that last question is more rheotrical, as I don't see the need to answer it. Other than with the roll of my eyes.

Today I had a fleeting thought that I want to share, as it was a stark reminder of how I'm wired and I believe many of us are wired as well. Having spent the last 9-10days with little faculty to prop myself up, I was privileged to come to a realization of my own frailty, weakness, and futility to carry myself forward on my own accord. This conundrum of weakness is really one I hope to explore more in the months ahead.

We're told both with words and inaudibly by everything and everyone around us to be tough in life -- and step up. We have to do this with our jobs, our families, our relationships, and just daily life in general. We all have to do things we don't want to do. This reality is easy to agree upon.

What is less manifest is that, at no point in doing so, should we fool ourselves into thinking that we, in and of ourselves, are the source of any apparent strength. In fact, what I mention above is not really demonstrative 'strength', after all. It's just doing things we don't necessarily want to do. The real 'strength' that underlies is the part I love the most. The strength is ours as a gift of grace and grace alone. It's not organic or home-grown.

If you think otherwise, I challenge you to show me just where you got your strength. If your strength comes from your mental faculties, I ask you where you got those very faculties. Did you earn them? Did you negotiate in the womb and make a winning case for some solid DNA? Right.

Is it physical strength? I will let sleeping dogs lie here, as we all know what happens to our physical flesh in the end. Battleship sunk.

If your strength comes from the many layers that you've built as a result of life's hardships thrown your way, I'd contend that you're possibly just hiding behind a heart of stone and don't really know what a fleshy heart feels like. It's easier to numb out, in fact. May not even be categorized as strength in the first place!

If we are really as weak as I contend that we are, then we have to ask ourselves not only where the strength we get originates, but also why we're the fortunate beneficiaries of this gift. Why are we so beloved? What did we do to earn it? Or what didn't we do?

To bring us back... I had a week-and-a-half of pure, unabated weakness. I was on my face. Crying at the simplest of things. Hearing a line in a song, or a phrase from a friend of loved one. A very sweet place to be. But, it only took one day - ONE DAY - of feeling somewhat 'ok' to pad all of that vulnerability back to where it was. Not completely back, but enough for me to notice.

Why is this? Is it a default pride within? Is it a coping mechanism? Is it a character flaw? A gift? Regardless of what you or I call it, it's real and it happens with me and probably many of you. I get one day of normal life, and the awareness and sensitivity I had just hours ago, is palpably muted.

I want to go back. Brokenness is so bittersweet. It's an emptiness that simultaneously overflows. My in-house strength is so small. I am only a recipient. How I yearn to go back and sit at the place where things that should move me will move me and my own pride will take a back seat.

DAY 9: Leaky joints... flat-out...

In the words of the great teeny-bopping poetic genius of our time, “Oops, I did it again.” (-B.S.) I have managed to let another few days pass since I proffered a check-in. My apologies. The consistent pattern seems to be that I wake up generally feeling ok, with good intention of cataloguing at some point that day… but then things inevitably change. A wild ride commences, over which I seemingly have little (or no) influence.

Let me bring us current, as best I can. Monday morning started with a requisite visit to the Emory Clinic. The Clinic is an outpatient center, across from the main hospital where I stayed, where people come for check-ins, lab work, and various infusion services (blood and platelet transfusions, outpatient chemos, fluids, etc). At 8:30am, this place was a sheer cattle call. People everywhere, most of them sickly and puny-looking (I include myself in this grouping). Median age: probably 60.

There was a general buzz about the room. The intake process consists of filling out some paperwork, and then taking a seat (or a lean against the wall) in the waiting room area for an unspecified amount of time until your name was called (yelled) by a very portly (don’t mistake with jolly) man named Grady. He was like the Disgruntled Emory Clinic MC, of sorts. Grady had a bald head and a heavy beard and would seem to get very frustrated every time he would yell a name and get no immediate response. “Powell…?” “POWELL????” Then some frail old lady, barely in earshot, would realize her number was up and would attempt to stave off the next accusatory lancing. By individual facial reactions, I would wager that this was the first time many people realized that their very own namesake could be used as an invective. I was sure to listen for “Smartt”. And when they called it about an hour later, I was ready.

They took me back and accessed my port for the first time since I was discharged. This consisted of pulling off the steri-strips (the incision is tender and still healing), poking on it to confirm the type and location of the access points, and then sticking a plastic casing with a curved needle into it in one smooth motion. Prick. Once in, they tape it up to keep me from ripping it out with an incidental arm movement, and then hook up a tube to plug in whatever the soup of the day need be. They took two vials of blood, and promptly sent me back out into the waiting room. The Land of Grady. Another hour-long wait, and the lab work was complete and they brought us back into the infusion area.

What I neglected to mention thus far is how miserable I was feeling that morning. I have learned that so long as I am on my back or lying down, I feel more or less stabilized. Conversely, when I am sitting, standing, walking, or in a car, I feel like the place is on wheels. My vision starts to play tricks on me. Not a fun feeling. As a result, I was a ‘fall risk’ in the clinic, meaning I got a special red sticker on my arm band that indicated such a distinguished privilege.

We spent the rest of the day – and I mean the rest of the day – sitting in a chair in the infusion center, among other elderly and cancer patients. Most of the day was spent waiting on someone to hear back from my doctor on what to do next. I was given a bag of IV fluids, a shot called Neulasta to stimulate my white blood cell growth, and a cup of Coke. (Note that I have been told by more than a handful of RNs and MDs that good ol’ Coke is the best thing for a variety of symptoms. I am still skeptical but will acquiesce for now.)

The ride home from the Clinic at the end of the day was pretty tough. It’s certainly not a straight shot from our home to Emory: lots of curves and turns. It’s also humbling not to be able to drive myself anywhere. Candace has continued to be the most unbelievable helper and caregiver one could imagine. She is truly a gift to me. I am so grateful.

Monday night our pastor Kris came over and gave me a ceremonial haircut. (He's not gifted in this area, but had access to some clippers) They told me that hair-loss is a lot more manageable when the hair falling out is already short, as it comes out it clumps. So Kris gave me a nice buzz. Feels great. He’s a big-picture guy, so we still need to go back in and trim around the edges, if you know what I mean.
Tuesday, Day 9, was a truly wild one. I woke, again, feeling decent, but all that changed when my migraines and nausea returned. It just creeps up on me out of nowhere. Different, this time, was that lying down on my back didn’t seem to abate things. I got to the point where I took a pain pill (my first on thus far – as I try to avoid them) they had prescribed me. It knocked me out considerably, but didn’t really help stop the madness. I was on my back, in the middle of the afternoon, and all of the sudden got a pretty violent vomiting attack. Came out of nowhere, with no warning. In one three-mintue fit, there went all my food and liquids. I was instantly dehydrated and knew that IVs would be needed to return me to stabilized levels. We called Emory and they told us to head to the ER. While I wanted to get back to Emory’s ER, which would make a possible re-admission more streamlined, I was unable to stay in the car any longer than I absolutely had to. Thus, we limped a few miles away to Piedmont (where this journey started with my Appendectomy!).

To make a long story short, prevailing medical thinkers suspect that the many failed lumbar punctures from last Tuesday are the culprit for most of my migraines. Gravity takes over and the spinal fluid leaks when standing or sitting, as opposed to lying down. Other than ‘riding it out’, a procedure called a blood patch was suggested, whereby they try to essentially plug the leaky spinal hole with my own blood… but since I have multiple holes and a delayed response, we’re somewhat forced into a wait-and-see pattern. We were at the Piedmont ER from 5pm until 2am. It was a long, slow night. We ended up getting another round of lab work, a cranial CT scan, and 3 more large bags of IV fluids. We went home and crashed.

Today is a new day and I’m glad we’re moving forward!

DAY 7: Dorothy was right: no place like home...

Sorry for going quiet since Thursday. I ended up spending the majority of Friday with my eyeballs glued shut, due to a sneaky nausea and vomiting attack that chased me down. Friday was, therefore, more of a 'just get by' kind of day. I never suspected that I would be unable at any point to share an update, but the last few days have proven just that.

They discharged me yesterday (Saturday), and so I was able to sleep in my own bed last night with my wonderful, wonderful wife. As icing on the cake, I was not awoken every few hours for blood draws or vitals. Apart from draining the bladder a couple of times, it was a pretty uneventful night. Thank goodness for that.

The sensation of losing taste buds is very awkward. The only food I really seem to crave is Rice Krispies with banana. Hot foods still annoy me. My mouth has a constant metallic taste which leads me to the mouthwash bottle several times a day. As you know me, I really love to eat... and savor good foods... so this is really a tough thing. The nausea comes and goes throughout the day, coupled with the lack of appetite-- not a good combo.

Ok-- I seem to be harping on the negative and have little lucidity to put cohesive thougths together. I better stop and go back and lie down until a better time.

Thanks immensely for your support and encouragement. While I cannot answer phone calls and emails very easily, please know that I really appreciate you following up on us.

DAY 4: Baby steps...

Just had my 10 steroids, so it's time to blog. I have found that I get energy for about an hour, and then the fall comes.

Today I had my 6th and final hyper-fractionated (i.e. more than one dose per day) Cytoxan drip for this cycle -- so we will claim a small vicotry while we can. Three days in the bag. The past is now behind us and the future is not yet real, so we sit in the present and marvel and how we're continually carried foward by God's grace and support.

I also am having two chemo drugs tonight for the very first time. I had Vincristine at 9pm and it was a rapid 10-minute infusion. Now, I just started on a 24-hour drip of Doxorubicin. My prayer, yet again, is that these chemicals be 100% lethal to the cancer, yet 100% life-giving to the rest of me. I am supposed to have a Cytarabine spinal tap tomorrow, but since I am still on a blood thinner called Heparin and they massacred my lumbar area on Tuesday, we may punt until Saturday. I am hoping we punt altogether... but will go with the flow. You can only have so many holes poked in your spine before things start to get dicey.

Well the prior 36 hours were pretty slow. I didn't really get on my feet from yesterday around 9:30am until tonight around 7pm. I eeked out 2 slow laps this evening... and that was about all I could handle. But when I cannot walk, the Lord carries me. That heart condition really knocked me down for a bit. With no exaggeration, I had more medications put in my body yesterday in one single day than I have over the cumulative total of my first 31years of life. Staggering thought. After seeing the ball drop, I slept on and off throughout the night somewhat well. I woke up to nasuea in the middle of the night, and they gave me Ativan to quell that and anxiety along with a kidney drug. (We did have 2 helicoptor landings. It made me think that there were some people who had a more unique New Year that even I did!)

Today I realized that I've become hyper-sensitive to all foods, especially hot ones. If something hot comes in the room, I immediately want it removed. Some colder foods, too, make me a little queasy. Those of you who are fond of my penchant for warm foods will find this hard to believe! My diet today consisted of rice krispies cereal, organic sugar-free applesause, and water. It was enough to keep me going. It's a moving target, but the name of the game is: if it doesn't repulse me, then eat it when I can.

There are some words from a book in the Bible, Philippians 4:6-7, that have carried me through some hard moments in the past few days, and it's written on our whiteboard in the room:

"Help me Lord not to be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present my requests to you. And your peace, which transcends all understanding, will guard my heart and mind in Jesus Christ."

In the past days, these promises have now come to life to me, because they are as real as real can be. These aren't just feel-good buzz words that we pull out of our back pocket when we're in a pickle. They represent one of several small pieces of the larger truth that governs the world in which we ALL live. Whether we recognize the existence of somthing or not, that doesn't change whether or not it really is, indeed, Truth! Crazy thought, huh?

The Lord has heard my cry out for Mercy and He has responded resoundingly. For that, I am so very grateful. His promises to me, and you, never come up empty.

My heartfelt gratitude goes out tonight to each of you, as friends and loved-ones, who are walking alongside me this time in life. Your prayers, words, time, and thoughts are selfless and shroud me in even more layers of love and protection. This is just what I need.