Wednesday, December 31, 2008

DAY 3: An unwelcomed guest...

Well I now know what an acute atrial fibrillation feels like. We spent all day (from morning until about 6pm) trying to quiet a racing and abnormal heartbeat in my chest. I felt some anxiety yesterday, as I was getting the Rituxan, and figured it would pass. When I woke up this morning feeling an erradic punching in my chest, I knew something wasn't quite right. I told a nurse tech in passing that it felt like I had an aggressive and awkward heartbeat. She reacted by telling the nurse, who quickly told the hemato-oncologist who is covering me in the absence of Dr. Flowers this week. She came in and took a listen with her stethoscope and immediately said it was most likely an atrial fibrillation http://en.wikipedia.org/wiki/Atrial_fibrillation).

They quickly called in a team of cardiologists who performed an EKG which revealed an elevated heart rate (~140 bpm) and a severe atrial fibrillation which meant that the top part of my heart was not consistently pumping blood into the lower half, which would lead to blood clotting and increased discomfort if left unattended. They also called in a radiologist to x-ray my port catheter to ensure that it was not interfering with the walls of my heart. (They ended up seeing that the catheter was too close for comfort, but since I have a port-a-cath, the catheter length is fixed and could not be shortened). The goal became to trigger a cardioversion, either electronically or chemically, whereby they would shock the heart with the hope of getting it back into proper rhythym. First, they had to slow the pulse which was accomplished by two oral pills, one a beta blocker and another a calcium channel blocker. Once the pulse came down, the team decided to try a chemical cardioversion which would take place by injecting a 500ml bolus of ibutilide directly into my heart to try to shock it back. This was preceded by a dose of heparin, a blood thinner, as we didn't want any clots that may have formed to be disloged. With a team of 3 cardiologists and 5 oncology nurses in the room, the moment of truth came. I was pretty stressed out, to be honest. I just clutched a small crucifix and told myself over and over that Jesus is the Prince of Peace and that He was right here in the room with us. The cardiologist was wathcing the heart monitor as he injected the solution and we were nearly compete-- yet the fibrillation persisted. Once he pushed in the very last drop, the fibrillation ceased and we reverted to a normal, stable heart rate. I was so grateful. The heparin will continue for another 48 hours. I have 5 wires attached to my chest that are sending telemetry data a few floors away for remote monitoring. I must say, it does feel great to have a pulse around 70 and no knocking under the hood.

I think I must've held my breath the entire day. It was pretty stressful. I was thankful for a team of knowledgeable Emory staff, and also some very kind guests who came to wish me well throughout the long day.

In the morning, before all of this unfolded, I had a tender moment where I put on my iPod and listened to a song called 'Cry Out to Jesus' by a band of a dear friend of mine. Like clockwork, the tears flowed copiously and I was literally doing as the song called me to do. It was a healing moment over which I had no control. I stared intently at this little crucifix I have been clutching this week and realized at that very moment just how much I love Jesus. Not because of the depth of my need for him in that moment of crisis, but more so out of a realization of just how much He has already done in love for me, for you, for those who have preceded us, and for those yet to come to Him. His promises will never come up empty.

The truth of who He is has become more real to me than gravity. More real that night following day, and day following night. I've said this before, but I will reiterate it again: life will never be the same for me. I've come to know my savior with an intimacy that I've never known possible. He is everything to me. I love Jesus, my Lord, my Creator -- the Creator of the universe -- with every ounce of my being.

Thanks for reading. Today was rough, but in the end I'd call it a landslide victory.

Tuesday, December 30, 2008

DAY 2: The never-ending epidural...






(Above are some great cancer goodies I have received thus far as gifts!)

Despite having 10 steriod pills in the evening, I slept fairly well last night! With the exception of nurse visits to take vitals at 3:45am and to change out the IV bags at 4:30am, a peaceful rest was the prevailing tone. The constant click of the infusion pump right next to my head sounds like a percolating rhythmic coffemaker or the cocking of a rifle. It's easy to put out of my mind when it's dark and queit.

Today started with a nice hospital room-service breakfast, courtesy my robust petite. I felt good. No nausea and plenty of lucidity. The food gave enough energy to walk 13 laps around the floor. As I am dragging my infusion pumo along with me, it's slow-and-go at best. The highlight is marking up on a hallway whiteboard another hash mark with each additional lap accomplished. My goal for today was 21 laps (one mile).

In addition, this morning included a melange of Pepcid, Zofran, Allopurinol, and Colaise as prechemo to my 9am round of cytoxan. I get cytoxan over three house, once every twelve hours, for six doses.

I was able to get a few minutes untethered from my infustion pump, who I affectionaly labeled 'TOBAC' (The Old Ball And Chain), who we can simply call 'Tobie' going forward. This meant I could get a shower! YEAH! What a treat! While I was only unhooked from Tobie for about 30 mins, it was a nice element of 'freedom'. They redid the dressing for my power-port so I got to see under the hood for a minute. Wait to you see this thing (see pic below). I now capable of handling injections at up 300psi! What?!? While free, I even snuck in a few hallway laps at a much more brisk pace. I'm up to 18 for the day. May work to get 3more by bedtime. I'm up to 18, so I need to get a few more before bed time.


The PharmD and oncologist came in shortly after lunch and told me I was to get a drug called Methotrexate today, which I had previously thought was only for the B-arm of the Chemo A/B block. Nope. It is a spinal tap where they spidurally insert a needle into the spinal chord to pull out about 12ml of spinal fluid (to test for center nervous system involvement, CNS), as well as leave room to inject 12ml of Methotrexate without over-pressurizing the spinal column.

They had me lift up my shirt and sit on the side of the bed, slumping over to expose and open up my lumbar vertebrae. They felt with their fingers at each disc, trying to find a good candidate. A prick and burn of litocaine was given to slightly numb the area, but they cannon fully numb the entrance to the spinal chord itself. Something wasn't working. They kept asking me to lean over further, or sit up straighter. The goal is to get the tip of the epidural needle into the right place, so that spainal fluid will flow out. After 4 or 5 fruitless pricks into this disc area, we weren't getting anywhere. So they called in a back up. This next nurse decided to try a disc two verterbrae higher. Rinse and repeat. Ouch all over again. After three or four pricks in that geography, some spinal fluid started to leak out, but then turned to blood, which made us call off that effort. It was time to give up for the moment. About 30 mins later, the oncologists's fellow came in and was confident she'd be able to make things happen. We would just go ahead and try the third disc area -- why not! This lady was much more aggressive: she told me to lie on my side and bring my knees up to my chest. She just stuck needles in my spine until I winced in pain. At one point, the needle hit a nerve and shot lightning all the way down my left leg, which numbed it for a good 20 mins. Surely this is not routine! After gritting my teeth a couple more times, we got it! She let 12ml of clear spinal fluid leak out (which will be tested in the lab for cancerous involvement), and over a 5 minute peoiod then injected 12ml of the Mehtotrexate chemo back into the spinal column. My lower back literally looks like a pin cushion, I am told. I feel like an unsuspecting middle schooler who managed to have a sign that read "dart board" taped to his back for a long unfortunate afternoon. The oncologist said that if we have have this much trouble on my next attempt this week, we will negotiate the possibility of implanting a resevoir in my brain, similar to the port, where they can easily draw spinal and brain fluid for testing and to inject the Methotrexate there. We'll see what that involves. Clearly greater risks and benefits would have to be considered. Not too hot on the concept, just yet. Below is a photo of the failed attempts in one of the three areas.


After the the 'back attack', it was time to tackle my first infusion of Rituxan, which notoriously causes an allergic reaction upon initial exposure. Being the only new drug introduced in the last 10 years that meaninfully impacts Lymphoma outcomes, it is critical that I be able to withstand the administration at any cost. After Benadryl and Tylenol as pre-chemo, I starting getting the first Rituxan drips. My resting heart rate was 108 bpm. I saw it beating through my shirt. By the grace of God, we had no complications! They started me at a very low rate of 50mm/hr, and were able to step it up to 100, 200, and then 350ml/hr over the 4-hour process. We just heard the 'beep-beep' from the pump, meaning that the large 800ml bag of Rituxan is empty and a very meaningful milestone has been passed! YES!

I have been drinking copious amounts water all day (about 5-6 bottles and counting). The more I keep hydrated, the less likely I'll suffer any liver, kidney, or bladder damage. To put it in perspective, I have urinated 7,800ml thus far today (and rising). I seem to fill up each jug by the toilet constantly -- I'm sure they just loooove me. Hard to think that I will actually excrete out this cancer. Putrid, yet so simple and beaufiful.

Now I'm getting pre-chemo for my 9:30pm round of Cytoxan (this will be my third dose since I started). I'm basically a pro by now, righ??

I received a daily devotional book from my mother for Christmas and today's entry was right on time, so I thought I'd share it with you:

"I am leading you along a path that is uniquely right for you. The closer to Me you grow, the more fully you become your true self --- the one I designed you to be. Because you are one of a kind, the path you are travelling with me diverges increasingly from that of other people. However, in My mysterious wisdom and ways, I enable you to follow this solitary path while staying in close contact with others. In fact, the more completely you devote yourself to Me, the more freely you can love people. Marvel at the beauty of a life intertwined with My Presense. Rejoice as we journey together in intimate communion. Enjoy the adventure of finding yourself through losing yourself in Me."

While I do truly feel like this specific journey is uniquely my own, I am enjoying a close companionship with others that gives me courage and boldness to push ahead. I guess this is a another manifestation of hands and fee of the true 'body of Christ'. The paramount command to love one another as yourself sounds simple and benign at first (borderline warm and fuzzy), but I see it as one of the most challenging and vulnerable acts we, as humans, can endeavor upon. By loving another selflessly, we are implicitly opening ourselves up to the very real possiblity of unrequited love. Absolutely nothing coming back to us. That rejection is felt at the deepest core of our being. So loving another genuinely as much as we love ourselves (we love ourselves to no end), it a high calling and one to reflect upon.

I am thankful that I am truly loved unconditionally by my Creator, as well as so many friends around me. I yearn to offer true love and friendship in return.

Rest well. Tomorrow is Day 3 and life is wonderful.

Monday, December 29, 2008

DAY 1: In the saddle... er, bed, rather...

Well I am here in the E wing of the 8th floor at Emory in the main hospital. I'm on a floor with people who are either awaiting or recovering from stem cell transplants. Whew. We made it to the starting block. And today was "Day 1".

I got a wake-up call this morning from the nurse oncologist saying I was on the docket for a 7:30am port placement. After collecting a few overnight items and my file folder that has been widening every day since November 19th, we headed to Emory.

We utilized the valet parking option which made it an easy welcome to the Hospital. After having my blood drawn to run the necessary labs (again), I was admitted into the interventional radiology department. There were several people coughing in the waiting area, which meant masks were in order. Now is not the time to get sick!

I was taken back to a staging area, asked to get in the Emory Healthcare hospital gown (the one with the drafty behind) and then the nurses all came in and asked me the routine battery of health history questions. The doctor came in and told me about the procedure and that it was local anethesia only. Hmmm. All the time, I anticipated it to be general anesthesia. Well, I guess they do this all the time and must know a thing or two.

I specifially asked him what kind of dual-lumen catheter (port) we'd be getting: a standard or 'power' (i.e. injectible) port. He hesitated enough to make me start to worry. He came back and said it would indeed be a standard one, and off we went. I was taken back to the O.R. where the radiologist who would be using ultrasound was prepping the space. There were about 5 people in there, all making inside jokes and hob-knobbing around. Brouhaha galore. The radiologist asked which kind of port we'd be implanting, a standard or power port. No quick reply came. So I sat up from the operating bed and said, "Hey, this is starting to worry me! Let's get this one right, ok!?" After another ten minutes of banter, someone came back into the room and proclaimed that the power port, rather, was needed. Glad we avoided that mix-up.

The actual surgical procedure took about 30 minutes. They shoot a fan of lidocaine into my collar bone area, make an incision by the jugular, trough out some tissue to make space for the port to recess a bit, and then run a catheter line down to the heart, stopping just shy of it. Whatever comes in via these ports goes straght to the main event. I made some pretty stupid small talk with the surgeoun during the procedure, just to keep my cool. It was not painful, but was certainly awkward!

After being taking back out to the staging area where they monitored my vitals for an hour, I was ready to be taken up to my room. The room itself is quite simple. Just a bed, chair or two, TV, and bathroom. There is an infusion pump right next to the bed that permits 4 different liquids to be mixed and infused into the port at once. They can also draw blood out from the port, as well. It's a two-way street.



This afternoon, the nurses gave me some sodium bicarbonate, Ativan for nausea and anxiety, sodium chloride, and Zofran for anti-nausea, Allopuranol for kidney protection, and a stool softener-- all as pre-chemo. I'll be honest, I felt horrible most of the day. It was a mixture of intense fatigue and nausea mixed in with abdomen pains. I don't know why I felt this way, but I did nonetheless. I kept asking myself, if I feel this bad now, how will I feel when the actual chemo drugs start??? As a result, an attack of fear and worry came against me in a very major way. Only after prolonged prayer with my amazing, loving, nurturing, selfless wife and a dear friend did it start to subside. It was very unsettling and I am reminded through this day once again: I must stay focused here. The Lord is my strength.

Not having much of an appetite today, I nibbled on organic applesause, fruit salad, and cereal. I did drink about 5 bottles of water in half a day. The goal is to keep fluids moving through the body as rapidly as feasible. Oh, and I did indeed.

Around 9pm, I got a pepcid to help my stomach react to the first chemo drugs: 10 dexamethosone pills (a steroid) and cytoxan (an IV given over 3 hours). I'm about halfway through this infusion, and feeling ok. I want to sleep, but they will do blood draws at midnight and check my vitals at midnight, 4am, 8am, etc. To boot, my room overlooks the LifeFlight heli pad, so we get an occasional air show from here.

Looks like I will be here about a week. Saturday would be the earliest I would be discharged, presuming my blood counts don't drop off too drastically.

The floor I'm on is fairly small. There are about 20 patients here tonight. 21 laps around the hall constitutes one mile. Over the course of the day, I've done a total of 7 measley laps. That's an indication of my level of energy. I was bouncing off the walls yesterday living in my normal environment and eating at my favorite restaurantes, and today I can barely walk a third of a mile around the hospital and have had a dozen drugs pumped into my bloodstream.

Oh, how quickly things can change! I hope for some rest and peace tonight.

Sunday, December 28, 2008

Lock and load. Here we go...

Well tonight I get to pack for a week's vacation. Probably will be a small bag with some PJs, a few books, a laptop, and some toiletries. Tomorrow morning I will wake up and drive over to Emory and see what's in store for me. I anticipate getting the results of my PET/CT before they give me general anesthesia to place the port in my chest... just in case something unexpected has happened in the last six weeks.

I was told to expect about a 6-7 day inpatient stay each time. This first stay may be a day longer due to the port implantation surgery and longer infusion times necessary, as my individual reactions are not yet known. Who knows. I've got a lot to learn (still).

At this time, I'm very peaceful and looking forward to this season to come. I anticipate meeting some amazing people (fellow patients, nurses, cancer survivors, etc). I can't wait to hear their stories.

Thanks for staying tuned. I will let you know how tomorrow goes when tomorrow gets here. Merry Christmas, yet again!

Thursday, December 25, 2008

Christ has come... Merry Christmas!

I hope every one of you had a joyous day. Today is a celebration of a remarkable event in the history of the world. While I desire to write more intently on the wonder and amazement (greater than ever before) that I now have surrounding the true meaning of Christmas, that will have to wait until a later date - one where I can give it the thought and reflection it well deserves.

But for now, we will hone in on the hours ahead: I'm on the eve of one of the many forks in the road in this journey. Tomorrow I will get a new baseline PET/CT scan that will reveal if the cancer has spread since we scanned it over a month ago, or if something else has happened. We will wait and see. Healing can come in many forms, as time will prove.

My prayer tonight is that God will use me, through this experience, to increase the faith of others. If my infirmity has the indirect effect of deepening the faith of another - if only one single person - I consider it a worthy endeavor.

The larger script in life is sometimes difficult to perceive. I know that I, too often, see it with a finite beginning and end. This is not the case. The divine story is as great as the cosmos, with no beginning and no end. In it, we all play a vital part. Our lives, be them only temporarily in the flesh, have implications both forward and backward that we will not be able to appreciate in this world. For that reason, the importance of building faith in another should take a paramount role.

Far be it from any one of us to know exactly how our role is most effectively played out, but if each of us is open and available to live it out as the Lord sees fit, then His glory will be greater, and ours will be less. And this is a good thing in the larger story of life.

Wednesday, December 17, 2008

A line in the sand...

I am scheduled to be admitted to Emory on December 29th. I'll be a first-ever New Year's Chemo Blow-out! Well, that didn't come out right. We don't want any 'blowing out' of anything chemo-related.

They are inquiring to see if I can have the port put in that same day I start treatment. Between now and then, I will get another PET/CT scan to see if the cancer is gone. Hey, no need for all that chemo if it is, right?

Time to savor Christmas -- feeling great -- and to remember what the season of Advent is all about. Something amazing is indeed soon to come.

Tuesday, December 16, 2008

A busy morning...

Well I spoke with all three doctors in the past 12 hours. This is good. I even have direct email communication with one of them. He doesn't know what he's in for... just think of all the spam I could send his way.

Ok. So all three agree now that R-hyperCVAD/M-A is the way to go. (The option is still on the table for me to get Vandy's experimental in-house program called MEGA, but I don't yet know if there's enough published info on that to get me comfortable with that treatment option.)

As a refresher, R-hyperCVAD/M-A is rituxan administered with fractionated cyclophosphamide, doxorubicin, vincristine, and dexamethasone, alternated with high-dose methotrexate (MTX) and cytarabine (Ara-C). I think the methotrexate can be administed intrathecally, which means directly into the spine. I'll pretend I don't know about that option, lest I have bone marrow biopsy flashbacks.

So I am leaning towards getting the treatment done at Emory with my Tiger Woods doctor, Dr. Flowers. He just seems to know his stuff. He said I can expect to be in the hospital for 5-6 days at a time, every three weeks, and it will likely be eight rounds total. (Quick math: 8 x 5 or 6 = 40-48 days)

At this point, my hardest decision is how I'm going to spend all this 'down time' in the hospital. Here are my options:
1) become wicked-good at on-line gambling and possibly squander our 401(k)
2) watch daytime soaps, talkshows, and see who 'my baby daddy' really is
3) scour all the notable check-out line magazines to keep on top of what Britney and Paris are up to
4) Explore the Bible more than I've ever been able to, read some educational books, make many new friends, and enjoy being still and silent for a season.

I think the 4th one will prevail. I take that back-- I *know* it will. Those other three options are like cancer in and of themselves.

It's easy to forget that each and every person will react differently to any given circumstance. For example, a doctor who treats ten different people will get ten unique outcomes. Once these drugs are put into my body, the doctors cease to have any influence. From that point forward, the body's cells themselves become the healing mechanism. That fact, alone, should be a miracle to us all. The true remedy here is not some smart doctor with impressive pedigree or the cocktail of particular drugs; rather, it's that each little microscopic cell will do its part to collectively heal me.

If that marvel alone doesn't evidence that we are indeed so wonderfully created, I don't know what does.

OK. The tree of trust is growing and I am so grateful that I'm not going this alone! Follow along. I think we will be glad we did this together.

Monday, December 15, 2008

Cytogenics results: positive for translocation...

This one will be quick, as I am still trying to process this info and learn what it all means. I think the clock is about to move pretty quickly to start treatment, as I was told this afternoon that my Cytogenetics tests came back positive for abnormal translocation.

What this means is that chromosome 8 rearranges when it gets near chromosome 14. This is called a MYC-rearangement.

As a result, my run-of-the-mill Lymphoma, which we knew to be diffuse large B-cell, is actually a more rare variant (just like Burkitt's) that is called c-myc DLBCL. Roughly 1% of Lymphomas are this type.

I have a lot to learn...

Friday, December 12, 2008

I am part of the 'Reluctant Members Club'...

Are we getting closer to certainty? Maybe. Here's the scoop...

I received a call a few hours ago from the Hematologist/Oncologicst from Vandy and he relayed two pieces of information. Firstly, he was irate that my Cytogenetics testing (to rule in or rule out Burkitt's) was still not complete and it would most likely be Tuesday. More waiting. Not sure what the hold-up is, but he assured me they were fighting those battles for me as best they can. Hmmm. I choose to believe him at his word.

Secondly, he said that based on the Pathology that Vandy completed, he had a recommendation for treatment that would be consistent regardless of what we learn next week about Burkitt's. He said that my Lymphoma has a 90+% proliferative rate. That means that the cancer is growing very, very rapidly. Most diffuse large B-cell Lymphomas have a 40-70% proliferative rate. Mine is closer to that of Burkitt's (high 90s) and therefore, even if it doesn't have the chromosomal anomalies of the Burkitt variant, it is still considered a 'high-grade' Lymphoma.

He was concerned that the standard R-CHOP chemo may not be effective against these aggressive, hyper-growing cancer cells. If we pursue the treatment consistent with Burkitt's (also a high-grade Lymphoma), then we would be covering our bases.

So what does chemo for a high-grade chemo look like? Well, it's pretty hard-core. It's called HYPER-CVAD. For the spelling bee champs out there, that's "rituximab with hyperfractionated cyclophosphamide, vincristine, doxorubicin, and dexamethasone, alternated with courses of high-dose methotrexate and cytarabine".

There are 8 drugs in the regimen. I would be in the hospital for 3-5 nights every treatment. I would need 8 treatments, three weeks apart. I would need a peripheral inserted central catheter, or PICC line, surgiacally implanted in my chest near my heart to take the IV. Dang.

The list of 'most common' side effects is longer than my niece and nephew's Christmas lists combined. I don't even know what half of these words mean: Myelosuppression• Hyperuricemia• Stomatitis• Nausea and vomiting• Neurotoxicity• Stomatitis• Vesicant• Cardiotoxicity• Hyperglycemia• Gastric irritation• Hemorrhagic cystitis• Alopecia• Insomnia• Constipation• Acute encephalopathy• Pulmonary toxicity• Pigmentation discorder• Diarrhea• Infertility• Hepatotoxicity• Fever• Cerebellar toxicity• Conjunctivitis• Flu-like syndrome• Typhlitis and necrotising colitis.

What I'd like to do, now that there appears to be a hint of art mixed in with the science, is seek yet another opinion from Emory and Piedmont on this approach. I'd hate to under-treat this. In the meantime, I found a great Leukemia/Lymphoma message board that will be a good resource for fact-finding from others in the reluctant members cancer club.

The actual phrase the Vandy doc used was, "If you can put up with the misery of HYPER-CVAD, you should." Misery, huh. Is there such a thing as joyful misery? We'll see.

Monday, December 8, 2008

What's for dinner? My own words...

Well I just knew at one point I'd have to eat my own words. Not that I'm too proud to do so, but there's just not much to hide behind when things have been quilled out in these cyber scrolls. On my original entry, I ended with, "Let us just sit for a moment, at these crossroads of uncertainty, and meet God right here."

I was just notified by the kind folks at Vanderbilt that they just received the block (my appendix tissue) *today* and sent it off to have the necessary genetic behavior 'MYC tests' conducted by a third party. Even with rush treatment, it will likely be the end of this week until we receive the results. [Thought to self: would chemo on Christmas Day be an option, just for fun?]

So, while I thought I'd pull over at these crossroads for a minute or two, looks as though it may be more like a week or two. Or three. While an immediate reaction could be one of frustration and impatience, I am content due to a comforting realization I had over the course of the weekend: in my 'healing', so to speak, cancer is only a footnote.

What I mean to say by this is that I now see the world through a new lens -- one through which walls of fear, judgement, doubt, and lack of true peace, are cracking right before my very eyes. Some of them are even tumbling down to the ground. While I initially thought I'd have to focus all my faculties on 'beating cancer' and healing my body, I'm quickly learning that the true healing that was needed was a healing of my heart. [Gosh, this is hard to put into words... and sounds a bit sappy. I will resist the urge to try to sound cool here.]

What made this realization very real and apparent to me was that, for the past week, I have felt a peace that I've never known. Let me type that again because I don't want to gloss over it: I have felt a peace that I've *never* known. I'm comfortable in my own skin. I feel physically terrific. I'm more thankful for every waking moment than ever before. I am starting to truly cherish my wife and the bond of marraige [think 'in sickness and in death']. I see the true beauty of friendships. I make no assumptions about tomorrow. I am not ashamed or nervous about sharing my faith in Christ [especially because it is growing in leaps and bounds].

Most of these fears I did not even know I had. Perhaps in seeing more freedom from them I've been able to recognize the hold they have had on me all along.

I would wager that most of what we choose to do, or not do, is driven on fear. What will happen if I fail? What will they think of me? What will I do next if that doesn't work out? What if I don't get what I want? What if they reject me? What if I don't get my way? What if I'm wrong? What if it hurts? What if I just plain look silly? What if they think I can't afford better? What if I'm actually right?! What if I end up thinking that God isn't really there because he didn't answer my prayers?

I am learning that we all have an open-ended invitation to LIVE without fear. Abundant life. Today. Right now. Maybe I'm comfortable sitting at these crossroads becuase I am healing right now in the parts of body that God truly cares about. It's a lot easier to put a finger on sickness in our physical bodies and a whole lot harder to find the other ailments that really do make us live life the way we do.

Maybe this cancer really is a footnote. Being healed of cancer will one day take a distant back seat to the true healing that's happening. I hope you can join me in that for yourself... without the cancer part, of course.

Wednesday, December 3, 2008

With a twist...

Our visit today at Emory was terrific; however, I got a call from the oncologist at Vandy just a few minutes ago that is giving me a lump in my throat.

Emory was fantastic. Their cancer center has scale enough to convey comfort to a potential patient, yet is personalized enough to make one feel ‘known’ (not the feeling of steerage I perceived at Vandy, on occasion). I got another blood draw (must be at least the 6th prick since all this started), and then we were greeted by a very nice social worker who sat with us to hear our story. A social worker?! Of course! This is how it should be done: surely someone needs to make sure every newly-diagnosed cancer patient has adequate access to information, is managing the stress/anxiety in an appropriate manner, and has the relational support resources to see them through the valley. The social worker was able to turn us onto some new resources regarding fertility, as well as some support groups that I think we’ll eventually explore.

We then met with the fellow of the doctor we were there to see. She took in most of the nut-and-bolt information on my situation, did a quick exam, and then fielded preliminary questions. Then, the main course was served: Dr. Flowers, director of the Lymphoma program at Emory. This guy… is Tiger Woods! I really mean it—my doctor… is Tiger Woods! He must have a twin. You be the judge:




His mannerisms were even the same. You could swap out the white jacket for a putter and autographs would’ve been in order. And the best part, is that when Tiger wants to win, he wins. I expect no less from Dr. Flowers.

He is on the inside track for Lymphoma research and advancements in treatment. He said that the first thing any person must do is have a professional Heamatopahologist at a teaching institution re-diagnose the cancer as a confirmatory step before any treatment commences. In my case, this is what Vandy was enlisted to do. Remember this piece of info, as it comes in handy later. If indeed it confirmed that I have diffuse large B-cell Lymphoma (DLBCL), then the R-CHOP would be in order. He echoed nearly 100% of what we had heard at Vandy… which fortified my hope and optimism.

I then shuffled across to another building to get an EKG (a few electrodes hooked up to my chest) and Echocardiogram (an ultrasound of the heart) to ensure that my heart is healthy enough to withstand one of the chemo poisons, Adriamycin (which can cause congestive heart failure). I think things looked ok, based on the quips of the technician who was doing the read. I found it humbling to lie on a table and see my very own heart on a screen, beating every single second, without fail. It really is more delicate and fragile than I ever imagined. Truly a miracle to think that it’s working when we sleep, when we’re awake; when we rest and when we exercise… and is one of so many absolutely critical human elements. I laid there in awe. I felt like I was staring a big piece of the ‘life’ in me.

Well after a relatively uneventful afternoon, working from home and trying to ward off an occasional headache, I got an inbound phone call from the doc at Vandy. He told me that the reason he had yet to get back with me was that their Pathologists were not completely satisfied with the reading of my appendix tissue slides. They requested that Piedmont here in Atlanta mail up the entire block (specimen) so that they could re-cut their own new slides, and run some additional stains (tests on the cell patterns).

More specifically, my original path report had noted that the Ki-67 protein had a proliferative rate of 90%. This simply means that the rate at which the cancer cells are replicating themselves is very fast. There is a rare form of AGGRESSIVE Lymphoma (vs. my supposed type, which is an INTERMEDIATE grade) called Burkitt’s Lymphoma that has effectively a 100% proliferative rate. The cells themselves are the same large B-cells. If mine is this rare type, it would require more aggressive and potent chemo – not R-CHOP, per se. Hmmm.

The Vandy doctor then said, “Ok, I need to scare you now. You need to know there is a very high co-existence between HIV and Burkitt’s Lymphoma. Many people who have HIV get Burkitt’s, but having Burkitt’s does not necessarily cause HIV. Are you at risk for having HIV?” Once I clarified with him what those risks are (blood transfusions, sex with an infected partner, intravenous drug use), he deemed it highly unlikely that I would have HIV. In fact, he told me to ‘put it out of my mind, as it would be highly unlikely’. But it was highly unlikely that a healthy 31-year old would get cancer, so while I put it out of my mind, I’ll be honest--- it’s just hiding behind some other part of my brain, still there.

Having broken the ‘no-google’ rule yet again, I’ve since learned that Burkitt’s is either Endemic (common to children in Africa), or Sporadic (Europe/America). While there will be 60,000 new Lymphoma diagnoses this year in the US, only 100 (!) will be Burkitt’s. There were only 12 in Australia in all of last year. Wow, this one is pretty rare. So remember all that I said about being comforted by having one of the most common sub-types of Lymphoma? That may be soon put to the test!

One final piece of info that plays into this Burkitt’s Lymphoma possibility. Well, three pieces, really: (1) it most commonly occurs in young males and adolescents; (2) it most commonly presents in the abdomen; and (3) it most commonly exists OUTSIDE the lymph nodes. You guessed it. All three of those apply to me.

So while I’m certainly going to wait until the pathology confirms or denies the existence of this rare, very aggressive form of cancer called Burkitt’s Lymphoma, I can’t help but think a shift may be happening here. The doctor told me NOT to start R-CHOP until we find out. R-CHOP would not be strong enough to knock out Burkitt’s. Great thought, eh? No topical cream on this one.

More to come… the next few days could get interesting. I trust you are doing well and I cannot thank you enough for being a part of my life at this time.

Tuesday, December 2, 2008

Blah.

I feel crummy today. A combo of nausea and a migraine... and I haven't even started chemo. Oddly enough, this is the first time I've actually felt crummy in a week or so. I guess it's a reminder that this isn't going to be any fun.

Monday, December 1, 2008

It's all relative...

A quick update on me, and then a story. I am going to Emory on Wednesday morning for a third and final opinion on diagnosis and treatment. I don't expect anything too new, but am willing to seek treatment there if they impress us. I am told we have 16 viles in cryogenic storage. So unless Candace wants 17 babies, we should have enough to work with. I say that in jest because there is no guarantee that fertility procedures would even work, but at least we have options there (we think). And finally, in order to make sure my heart is healthy enough to withstand the chemo, I am getting an EKG on Thursday. I would start chemo at the end of this week, or early next week... as planned.

On my next entry, I'll tell you a little more about one of the chemo drugs in particular that really gives me the jitters, as well as some amazing acts of love from my friends. Now, on to the story...

I had dinner tonight with a new friend at one of my favorite local restaurants. He and I are both 'corporate' people, which meant we had enough in common that could go unspoken and leave room for more meaningful discussion. This was the first time we've sat down with one another, which offered a first-time glimpse into each other's lives. What I learned has given me great inspiration.

He has a brother who lived his entire life perfectly healthy until a massive seizure his freshman year of college (1992) revealed a very large brain tumor. After three major brain surgeries and some radiation, things looked promising. Thirteen years later in 2005, after he had been living life as a normal young man, another seizure came which again revealed the reemergence of yet another large tumor in his brain. The best medical minds in the country offered only two options: risk serious infection and death via another operation which would only temporarily relieve the problem; or, do nothing and live no more than a number of months. He chose the latter option, yet is still alive today. He is able to play his guitar and take trips and spend time with his family. This young man is truly living.

Unfortunately, my friend never knows when 'the call' may come, telling him that his brother let go, but he takes comfort in (a) that his brother is continuing to live a normal life one day at a time and (b) that his brother has a relationship with the Lord and knows where life leads us when it ends. My situation looks very simple and manageable in light of his. I am inspired by his perseverance and will to live, even if in stark defiance of all medical odds. I only hope I have the courage to do the same, should I bet met with that same crossroad.

"You do not know what tomorrow will bring. What is your life? You are a mist that appears for a little while and then vanishes." [James 4:14] I tend to react to statements like this with a "yeah, yeah -- I know", but hearing the stories of the present sufferings of others, and even being faced with more uncertainty in my own life than ever before, is widening the door into the place where I know the truth of those words. Tomorrow... if it comes, is a gift, indeed.