A Bump in "The Road Ahead."

There's good news and not-so-good news. First, the good news: for those who haven't heard, my scan on the 11th was clear. The cancer is still at bay, I'm still in remission! This is an incredible blessing...perhaps the triple threat (surgery+chemo+radiation) has done the trick. 90 more days, baby!

In the "not-so-good news" realm, the 18th came and went -- with no new forehead. The short version of a long story is that the prosthetic fabricator made the frontal plate out of the wrong material. For those who are interested in the long story...

Here's the original plan:

The image above is from the 1-mm brain scan I had a few weeks ago -- that's actually my skull, you can even see the scar from the bone saw used in previous surgeries. The gold portion is the plate they've created out of titanium mesh. Now, for nearly every cranioplasty patient, titanium mesh is the best option -- lighter, stronger, and integrates well with natural tissues (bone and skin). In numerous consultations with the neurosurgery team, the prosthetic fabricator was able to make a solid case that titanium mesh is the best way to go. Unfortunately, I am not your standard cranioplasty patient. Simply said, titanium mesh is the best way to go, if you never have to remove it. My neurosurgeon here is a fabulous guy and very experienced, and has put many of these plates in -- but, admittedly, has never had to take one out. With my history of tumors and prior brain surgeries, we are realists and understand that (despite the good news above) it is entirely likely that we'll need to go back in at some point to remove additional tumors. Titanium mesh integrates with the healthy bone, and the scalp actually settles into the mesh -- it really becomes a part of your head, which is a great thing for most patients, but not for me. In addition, titanium could mask a recurrence -- since it's metal, it can introduce imperfections and "false positives" into an MRI, and could even mask recurrent tumor tissue. So, for at least a few reasons, titanium mesh is a bad idea for me, and the neurosurgeon has made the right decision to cancel surgery and order an acrylic plate. We're back on the calendar for 15 January, so stay tuned!

Training has gone quite well over the past month or so. Those of you who know me are well aware of the fact that these little "bumps in the road" like cranial reconstructions and brain surgeries don't slow me down much...and you may remember from a previous blog that I've decided to specialize in the half-marathon. My goal is to break 1:30 next year, which starts with the National Half-Marathon in March. Goal for this race is somewhere in the 1:37s, around 7:25/mile pace. I'm focusing on the Furman Institute's of Running and Scientific Training (FIRST) half-marathon plan, and it really seems to be working so far. Has anyone used FIRST before? The book "Run Less, Run Faster" is largely based on Furman's research, and I must say I'm pretty impressed. PRs at both 5 and 8 miles just in the last few weeks (36:11 and 59:24 respectively), so it can accomplish some pretty good results on only 3 runs per week.

That's all for now -- of course we thought we'd be in recovery from surgery this week, so didn't make any plans, and will be spending a quiet Christmas at home with Pooh and Monkey. To be honest, I wouldn't have it any other way. Be thankful for life and loved ones today, my friends!

The Road Ahead

Well, I promised an update after last Monday's appointment with the neurosurgeon. Good news -- I'm fully healed, and ready for reconstructive surgery! A concern and a praise at the same time, I suppose...I'm very ready for this whole ordeal to be over, but not necessarily looking forward to another major surgery -- my third one this year. But, if you know me, you know it won't slow me down. Here's the road ahead:

23 November: 1mm-cranial scan. This is like a CT, but a CT is usually done with 3mm or 5mm "slices." To reconstruct a 3-d image of my skull, they need to do one with 1mm slices...that just means a really long CT scan...probably two hours or more. They'll use the 3-d imaging from that scan to construct the prosthetic that will go where my forehead used to be.

11 December: Brain scan (MRI). Remember the "90 Days at a Time" blog? Well, my last scan was 16 September...so you can do the math. We've made it another 90 days in remission, and we need to check again to make sure the cancer is still at bay. This is basically unrelated to the infection and the reconstruction, but a significant event nonetheless.

14 December: Neurosurgery and radiation oncology consults. Basically, appointments to go over the scans and learn the results. Hopefully, we'll restart the 90-day clock!

18 December: Reconstructive surgery. They'll open me up again, place the prosthetic in, "trim to fit," and close me back up. In general, the shortest and simplest of all the surgeries I've had, but there are some potential complications and risks. If all goes well, I'm only in the hospital overnight for observation, and home that weekend.

31 December: The Fairfax Four road race! What, you thought I'd let surgery stop me from training and running? Come on...

So, there you have it! A new forehead for Christmas. There's a song there somewhere...

Race Report -- Richmond Half-Marathon

Greetings bloggers! First, the running news. I've made the decision to specialize -- meaning I've probably run my last marathon. My challenge is to find a distance long enough to satisfy my love for the long run, but short enough that I can still be competitive. I realize that to be competitive at the marathon distance, I need to be in the 2:30 range -- something that is just not realistic for me. However, if I move down to the half marathon, in the 35 - 39 age group, I can place (and maybe even win a few) if I get under 1:30. I think that's well within my ability. So, let it be done -- I'm now a half-marathoner.

That said, today was the Suntrust Richmond Half-Marathon. I had not quite trained as much as I would like -- I ran the Leavenworth Half-Marathon in October with almost no training, then trained about five weeks after that race for Richmond. Still, I as hoping to break 1:40 -- about 7:37 pace. Well...

You've all probably heard of Hurricane Ida. It's been wreaking havoc across most of the east coast, and here in Alexandria it's rained for about five straight days...Richmond too. But, a little light rain isn't much of a deterrent...it actually makes for pretty good running weather, most days. The race started bright and early at 0730 -- parking was plentiful and easily accessible, and only a few blocks from the start. It seemed there were fewer porta-potties than there needed to be given the number of runners, but I was early enough to wait it out in line.

The course was flat and fast...beautiful fall colors, some of the course along the James River, and most of it in either historic oldtown or in one of the many city parks in Richmond. Live music was plentiful, and the water stops were well-placed and well-stocked. Unfortunately, there was almost a complete lack of any fan support -- perhaps because the half-marathon started 30 minutes prior to the full, or perhaps because of the weather, but it was really just a few hardy folks standing on their doorsteps and a couple dozen at the entrance to Joseph Bryan Park.

No problems during the race, but my legs started to get heavy around 10 miles...not sure why, but it made the last few miles some pretty tough ones. I can't really blame the course or the weather, so it was probably just a lack of training, lack of sleep, or nutrition issue. Final time was 1:42:23, about two and half minutes over goal time...398th out of 4578 total, and 45th out of 366 in my age group. Not too bad -- and the five weeks of training since Leavenworth paid off by knocking almost 10 minutes off my time from that race, but still a couple minutes short of my goal. Next up -- the National Half-Marathon, 20 March 2010.

In other news, my next neurosurgery appointment is on Monday (16 November). Hopefully, they'll do a physical assessment and schedule me for reconstructive surgery. I'm really not looking forward to another surgery and another 4 - 6 weeks of recovery, but I'm ready to get this episode over with. Put me head back together, and let me get on with living!

For the "Monkey Fan Club," you'll be happy to know that she is growing like a weed and expanding her vocabulary daily. I'm also afraid she's hit the "terrible twos" about six months early...it's becoming quite a challenge, but an enjoyable one.

Will let you all know the results of the Monday appointment!

90 Days At A Time...

My brain tumor was first discovered almost 10 years ago -- in December 1999. It was a complete stroke of luck, if you believe in such things (I don't, but that's another post). While playing basketball with a city league in St. Louis, I dove for a loose ball and collided with another player, losing consciousness for about 15 seconds. When I regained consciousness, I couldn't move my right arm. An ambulance ride and a CT scan later, I learned that I had sustained significant damage to my C5 cervical nerve, weakening my right arm to the point where I couldn't lift a 16-oz can of soda. I was a Captain in the Air Force at the time, and Air Force policies dictated that I also have an MRI of the brain to rule out any hemorrhaging or potential complications from the concussion. What followed can only be described as surreal.

An MRI of the brain can be an intimidating experience for the uninitiated (of course, I sleep through them now). Your head is immobilized by a plastic helmet, and you are slowly moved into a tube about 24" in diameter. You must be completely motionless -- for about 55 minutes. In my case, there was a small mirror just above my eyes, which allowed me to see out the tube, between my feet, into the MRI room where the technician was sitting. I tried to count the minutes as they crawled by...15...30...40...and about 45 minutes into the scan, a Colonel arrived. Five minutes later, another Colonel. And then another. And another. An hour into the scan, it was finished -- but I was still in the tube, watching with growing desperation as four Colonels pored over the screen where I can only assume my brain was on display. Born in and raised under the care of military hospitals, I knew Colonels were the Chiefs of their various divisions within the hospital -- neurology, neurosurgery, radiology, internal medicine, family practice...who were they? What did they see? After an eternity, the table started to move and I slowly slid out of the tube. The Colonels were gone.

The next day I received a call from a doctor in neurology, who wanted to test my right arm to determine the extent of the nerve damage. He also provided me with a referral to Barnes-Jewish Hospital in St. Louis to see a neurosurgeon. After repeated questions, he divulged that they had "seen something" on the scan, but didn't know what it was. The subsequent neurosurgery appointment confirmed the rumor, but diagnosis remained elusive -- an arachnoid cyst, a birth defect, a hamartoma. A year and a half later, along with second and third opinions at Deaconness and Sacred Heart Medical Center, and still no real confidence in what the thing was. But it was there. And it was growing. And it had to be removed.

Thanks to an article I ran across in Time Magazine and the sheer brilliance of Dr. Keith Black and his team at the Maxine Dunitz Neurosurgical Institute at Cedars-Sinai, we finally got a diagnosis, and scheduled surgery -- going under the knife in April 2001.

That first surgery was followed by serial brain scans (basically MRIs) every 90 days, and for the last eight years, I have been undergoing a similar routine. Life really only exists until the next scan. Is it clear? 90 days of remission. Is there a recurrence? Then the process begins again. Surgery? Chemotherapy? Radiation? You literally learn to live 90 days at a time. Each clear scan is 90 more days of living. 90 more days of running. 90 more days of fighting.

Which brings me to the point of the historic tale. I had another brain scan just a week or two ago, and recently got the results. We're all clear! The infection is gone, and there is no sign of any recurring cancer. No more tumors. The surgery, chemotherapy, radiation, and antibiotics have all done their job. 90 more days, baby! 90 more days...

I'm Back!

After six weeks of daily IV antibiotic treatments, I'm DONE. Finally. The good news is that the infectious disease docs think the infection is on the run, I've had the stitches removed, and the incision looks great. As you can see below, my profile still leaves a lot to be desired -- but that will all be fixed with some plastic surgery in December/January to rebuild my skull. The reconstructive surgery itself carries some pretty significant risks, but I won't bore you with those details. Here's the great profile shot:

Well, looks were never my strong suit anyway...and it makes Halloween easy...and GEICO has already contacted me about doing some commercials (just kidding).

I feel fine, and am even slowly starting back to work. Most importantly, the central line (PICC) was removed, which means I can run again! Yes, after, six weeks of sitting on my derriere, I laced 'em up again a few weeks ago. I sure didn't set any land speed records, but was able to run an easy four miles at 8:55 pace...much slower and shorter than my usual Sunday run, but it felt great just to be on the road again (thanks Willie Nelson). The challenge now is to run the half-marathon -- and finish with dignity -- next weekend. I usually train 16 weeks for a marathon, and at least 8 - 12 for a half-marathon...and somehow I'm going to give it a shot after only four weeks of training. I had my last long run today, and did 10.3 at about 8:15 pace. I'm definitely not going to meet my goal of breaking 1:30 for the half, but I'll at least finish. Stay tuned for the race report...it should be an interesting one! I've also registered for the Richmond Half-Marathon on November 14th, so maybe I'll be sub-1:30 by that time, but that's still pushing it.

Many of you who have contributed will be happy to hear that the helmet is truly a work of art. I've added stickers from Washington, Oregon, Texas, Kentucky, and Ohio, as well as a very special one from New Zealand (thanks !) and a few others. I also added a monkey, of course! Sticker count is now up to 30, with room remaining...though I did receive one Texas sticker that was bigger than the helmet itself...not sure what to do with that one. So, here's how it looks right now:

Your support and encouragement has been instrumental in my recovery -- thanks to everyone! Another blog soon, I promise...

Live Strong Action

My wife is so awesome!
I've been working with the Lance Armstrong Foundation for a number of years, raising money and raising awareness. The LAF is now initiating "Live Strong Action," where you can pay tribute to those who have inspired you. Take a look at the dedication page my wife did for me. So cool! Even better, if I've motivated or inspired you in some way, feel free to add your name...it doesn't cost a cent!
LIVE STRONG...

Helmet Head

Well, first and foremost -- I think I found the perfect helmet -- thanks REI!

It's even been approved by the neurosurgeon! Of course, you'll notice that it's completely blank -- no stickers yet. More on that in a moment.

Status Update: I'm doing pretty well. I'm not in any pain, just dealing with fatigue and the daily grind. I have medical appointments at either the National Institutes of Health or the National Naval Medical Center almost every day, with visits and deliveries from the home healthcare folks at CORAM at least once or twice a week. I also get daily IV antibiotics, and Pooh is a pro now -- we've got the whole IV thing down to an easy routine. The side effects of the Invanz antibiotics aren't too pleasant, but I won't bore you with the details.

Today was supposed to be a fairly big day...the day I get my stitches removed! We took the hour trip up to NNMC, waited for the neurosurgeon, and upon examination found that about half the incision had not yet healed adequately for the stitches to be removed. So, they took about half of them out...well, it's a start anyway! Back next week to get the other half out. Here's how it looked:

As you can see, I haven't been able to cut my hair for a few weeks. I think this is the longest it's been since high school! In any case, I'm doing well, feeling fine, and resting as much as I can. I'm off the roads and off the bike for at least four more weeks, but I'm still hoping to keep my race schedule intact. I might not meet my goal of breaking 1:30 in the half this year, but it's still on the books...it just might take a bit longer.

Finally, about the helmet. THANK YOU so much for all the stickers and support! Here's the current tally:

1 Ohio State Seal (thanks Jen)

1 Ladybug (thanks Jen)

1 Kentucky Wildcat (thanks Aunt Barb...tough one to use for a Duke fan, but I used it!)

1 "No Brainer" logo (thanks Pooh!)

1 "Good as New" logo (thanks Pooh!)

1 Band-Aid (thanks Brian)

2 Stars (thanks mom)

1 Mickey Mouse (thanks mom)

1 bunch of grapes (thanks La Toscana Winery)

1 Major rank, soon to be upgraded to Lt Col (thanks Don!)

2 American flags (thanks Brian)

1 "Custom Cruiser" (thanks Brian)

3 words: "Conviction," "Hope," and "Commitment" (thanks Sharon)

We're up to 17 stickers, with LOTS of room left. Keep them coming!

And, if I haven't told you before, all you bloggers are wonderful people...as are those who read and comment, but don't blog. The support (and stickers) you all provide is tremendous. Keep running and keep fighting!

Foreheads are Overrated -- And A Challenge to Bloggers!

So, here's the latest -- along with pictures this time, finally!

After a great deal of research I don't pretend to understand, the petri dishes grew whatever they needed to, and we have a name for the bug that attacked my head and face -- enterobacter aerogenes. Go ahead and click the link or Google for yourself -- it's not pretty. Highly destructive, high mortality rate, all the nasties you don't want to read about. Fortunately, it's only really dangerous if you have "a prior history of surgeries in the area, cancer, or an immune system compromised by chemotherapy or radiation treatments." NICE! I'm batting a thousand on that one...but I'm doing well. The infectious disease docs at the National Naval Medical Center were outstanding, and isolated the bug in time to treat it appropriately. Once they found the bug causing my infection, they prescribed the right antibiotic and installed a Peripherally Inserted Central Catheter (PICC) line. That was quite an impressive process -- a 43cm catheter that goes from my armpit to my heart -- but in the end it was far less traumatic or painful than I had expected.

With the right antibiotics in hand and the PICC Line inserted, I was discharged from the hospital last night and sent home. This morning a home healthcare nurse from CORAM Home Healthcare infusion services arrived, and provided

me and Pooh with all the equipment and instructions on how to administer the antibiotics -- 30 minutes once a day -- not bad at all. It helps that Pooh's mother, who is a 30-year OR nurse, is staying here with us -- and our next-door neighbor is a transplant and PICC nurse. We're covered! The CORAM nurse walked us through the process this morning, and we're on our own tomorrow!

I'm not in any pain and I feel fairly good, but I sure don't look pretty. Here's the latest shot, taken just before I left the hospital:

There is still some swelling from both the surgery and the infection, but once that swelling goes down, there will be quite a canyon between the top of my head and my brow. I'll probably look like something between a cro-magnon man and a klingon, but that's okay...I was never much to look at anyway, and I've already got a wonderful wife who loves me to matter what I look like! At least, that's what she tells me...

A CHALLENGE TO BLOGGERS

Okay, here's where the fun begins -- because my brain is basically exposed and unprotected (only covered by a thin layer of skin), I have to wear a helmet whenever I'm out and about or doing anything active (including running). So, I'm going helmet shopping tomorrow. Here's your chance to "get involved" -- send stickers! I'll get a plain black biking, climbing, or skating helmet, and decorate it with all the stickers I receive from fellow bloggers against cancer and everyone else. Feel free to get creative as you like -- a state sticker from where you are, a sticker from your last race, a photo, your favorite slogan, whatever -- just please use good taste (no profanity), and I'll find a way to fit all the stickers on my helmet and show off the great support I've always received from blogland. If you don't have my home address, please send an e-mail to moylesm@hotmail.com and I'll send it to you. I'll even upload periodic pictures of the infamous cranium cap! Thanks to Peggy for the great idea...and start sending!

Next blog will have a few race reports and more photos. Signing off with a farewell from the Monkey...love to all!

Made it Through Another...

Greetings fellow bloggers! It's Mike this time...blogging from the National Naval Medical Center (NNMC) in Bethesda, MD. Wow, what a turn of events.

Angie ("Pooh") gave a pretty good summary in the previous blog. Basically, I was fully recovered from December's surgery, feeling fine, the what appeared to be just a headache snowballed into a craniotomy #4! Far be it from me to place blame, but from what we now know it appears that something unsterile was introduced into the cranium during my last surgery. That was enough to foster an infection under the frontal plate, which has slowly festered for the past few months. It then exited through my right temple and began to attack the soft tissue above and around my right eye, which is when I first became aware of it. By the time we noticed and got to the ER on Monday afternoon, the infection had destroyed the entire frontal plate and done some damage to the sinus cavity and even the dura (sack surrounding the brain).

Surgery yesterday morning was actually not craniotomy #4, it was craniectomy #1 -- the removal of the frontal plate. After some pretty serious labwork to figure out which bug (or bugs) have been throwing a party in my head for the last seven months, I'll be put on targeted antibiotics and sent home -- probably 3 - 4 days. I'll come back in 14 days for a checkup and to get the sutures removed, then back in about 6 months for a cranioplasty. They've made a mold of the bone that was removed, and will recreate it with either titanium mesh or a plastic polymer. The idea is to make me look basically the same as I looked before the event -- I asked if they could make me better looking, but apparently it's pretty hard to improve on what I've already got ;-).

I feel just okay. Not a lot of pain or discomfort, this struggle is far more emotional. I wasn't ready for this. I didn't have time to educate myself or prepare, mentally, emotionally, and psychologically, for this event. The hospital is not nearly as nice as Cedars-Sinai, and it's pretty lonely. I think things will improve as I spend more time here, but more than anything I just want to go home.

I owe quite a few blogs, including several race reports. In short, training has gone very well -- I've hooked up with the FIRST folks, and their training plans have been working for me so far. They've been profiled a number of times in Runner's World, so you may have heard of them. I'm focusing on half-marathons right now -- did the Marine Corps Half, and was happy with 1:41, and had planned to do the Air Force Half on 19 September, but will probably have to miss that one to recover. I hope to follow with the Richmond SunTrust Half and the Oktoberfest Half-Marathon, but we'll see how recovery goes.

I'm on a public PC at the hospital, so can't upload photos...but if you're on FB, I've put a few there. More to follow...I may actually have time to catch up on my blogs now! Thanks to all the bloggers who have already sent me notes and posts on FB...you all ROCK, as usual. Keep praying!

Craniotomy #4

Okay, this is Angie, so bare with me. I'm a bit tired, but am hoping this will all make sense.

To start, Mike wants to say he is sorry for the lack of updates since March.

Everything was going great, expect for a minor bone pain on the temporal area, right by his eye...we were starting to settle back into our "new normal". Mike has been training like mad and was preparing for the Leavenworth, WA half-marathon in October.

This bone pain was checked at his 3 month appointment and nothing was found. The MD said it was just still healing, some post surgical changes. So, he kept dealing with it, hoping it would go away. Thursday or Friday of last week he was having enough pain that he asked for some Ibuprofen. Okay, so that sounds minor to most, but for those of you that know Mike, taking even and Ibuprofen is a "sin"! Well, along came Sunday, he had such a bad headache, with some slight swelling, that he decided it was time to call the CA MD. They said it was unlikely that it was anything too serious since he had no symptoms...hmm...where have we heard that before? "Oh, nothing to be worried about", says Mike, "off for my 12 mile run". He had a miserable run. Chalked it up to lack of sleep and possibly, not enough to drink. Later that day we spent the afternoon downtown with my brother's family and his forehead and eye became swollen. By the time we got home he wasn't feeling good at all. He looked like he was in a boxing match--and he didn't win! (I'll try to post pics later--got to figure that out again :))

Well, Monday rolls around and we had another big day planned to see the "sights" of D.C. But, Mike woke up with his entire right eye swollen shut and the swelling was half way down his face (again, picture later). Needless to say Mike KNEW something was wrong. Made an appointment at the MD for that afternoon... As suspected his GP (general practioner) could do nothing, so up to National Navy Medical Center's ER. Some labs, a CT, LOTS of waiting, an MRI, neurosurgery consult with Walter Reed Medical Center, they determined that Mike had osteomyelitis. At about 4am...they FINALLY admitted him to the hospital to start massive IV antibiotics. There were several questions still to be answered... is the bone (in the forehead) dead, if not will the antibiotics save it? Did the infection cross the dura into the brain tissue?

Well, my brother and I went home to catch some zzz's, not knowing what to expect. Mike was NOT optimistic about this. Finally home at 5am, and asleep by 530 or 6, my phone rang at 855am...it was Mike stating that the head of neurosurgery at Walter Reed Medical Center reviewed his case and they were doing surgery immediately. My heart sank, I was hoping he'd just have to do antibiotics. He said they'd wait on me to get there..."I'm thinking, what, is this a dream?" I hop in the shower to wake myself up, grab my brother and off we go in rush hour traffic on I-495 north. I'm mad, scared and nervous...and I-495 was a parking lot. Thank the good Lord my brother was with me. 930am and only to I-66 (those of you who know the area, feel my pain)..Mike calls..they are doing surgery at 10..I thought, "no way I'm gonna make it"...Mike trys to stall and I push a little harder through traffic. Finally I get north of Tyson's Corner and "free" road. I get there 1015 am and rush into Mike's room where we both share our feelings, crying and then get strong for one another. 1040 and off he goes...

The MD said that he can't save the bone and removing it is the best thing to avoid further infection. This means that Mike will not have a forehead bone for 6-8 mo. He will be in the hospital for the rest of the week getting heavy antibiotics while the Infectious Disease MD's figure out what is growing. Once that is determined and he heals from the surgery he will come home with a pic-line so that we can do more specific IV antibiotics at home for 6-8 weeks. He will be off work for 4-6 wks and, I assume, no running for 8 months, or more. He will wear a helmet to protect his head from any head trauma. Once the infection is gone for good they will put in a titanium plate.

The infection could be a delayed onset from surgery or, before the bones fused back together Mike could have gotten dust in his eye, nose or breathed in something that caused this. It's hard to tell and at this point not worth worrying about.

The surgery went smoothly, he did well. The infection was localized, and did not cross the Dura. I saw him in the ICU briefly where he was quite the comic as usual. Good to see though.

I don't know much more about his treatment/care/post-op process at this time. All I know is that he made it through and has all his functions! Thank God!!

Thank you all for your prayers! We love you all...

The Fundraising Dilemma

Without sounding too conceited, I think I have a pretty powerful testimony. Three brain surgeries, 22 rounds of high-dose chemotherapy, and now 42 consecutive days of combined chemotherapy and radiation. Originally given 6 - 8 years to live, since then I've married the woman of my dreams, had a beautiful daughter, and run marathons and duathlons. I'd like to think that all that could be used to motivate people, raise awareness of brain cancer, and maybe even raise some money for brain cancer research.

I think some people are motivated. I think I've helped raise awareness. Unfortunately, I've always struggle with the fundraising part. I remember, back in high school, volunteering to go door-to-door to raise money for The March of Dimes. As important as that cause is, I absolutely hated it. I hated asking people for money 20 years ago, and I still hate it. Even if I firmly believe in the cause -- or have a personal relationship in the cause, like brain cancer -- I hate the fundraising part.

Despite my dislike, I've been fairly successful. I've probably raised close to $50,000 over the past seven marathons -- sometimes the American Cancer Society, other times the National Brain Tumor Society, even the Leukemia and Lymphoma Society. I think that somewhere in the back of my mind, I harbor a hope that a cure will eventually be found, and perhaps some of the money I've raised in the past will help that happen. On a personal basis, I also know that it provides an added incentive. 22 miles in, when everything tells me to stop, I think about those who have pledged a dollar or two per mile -- hard-earned money out of their own pockets, every dollar one more reason to keep going, mile after mile. In the 2006 USMC Marathon, I walked the last 8 miles and passed out at the finish line. Last year, in Seattle, I ran the last 16 miles with quad cramps, stopping every few miles to massage my own legs. I'm fairly certain that I would have two DNFs on my record if it weren't for the support -- spiritual, emotional, AND financial -- of friends and family.

So, here we go again! You all know that the Rock-N-Roll Seattle Marathon on June 27th is my "comeback" race. I ran the Seattle Marathon a week before my third brain surgery, and I gave myself six months to come back to full strength and run the inaugural RNR Seattle. This race will benefit the National Brain Tumor Society -- an outstanding nonprofit organization that has been instrumental in my fight against cancer. Please, feel no pressure -- but if you'd like to contribute, I've set up a website at http://www.braintumorcommunity.org/goto/Moyles. One dollar a mile, two dollars a mile, $25 or $50 or whatever -- every little bit helps! Help me finish this race, and help NBTS find a cure!

A Rite of Passage

I MADE IT.  

I haven't been "on the blog" in a while, and there's good reason...this radiation is pretty nasty stuff!  Combined with chemotherapy, it's a pretty brutal regimen.  However, after 42 consecutive days of simultaneous chemotherapy and radiation, I'm DONE!  Today was my last treatment.  Praise God!  

In retrospect, it really wasn't too bad...though the "radiation sickness" -- basically nausea and fatigue -- was pretty serious.  You literally feel like you could sleep all the time, and you probably could.  I ended up taking a few days off work in the past week or two, and spent most of the time comatose on the couch or in bed.  The level of fatigue is unlike anything I've experienced before -- you all know what it feels like, waking up the morning after a marathon, where everything in your body hurts and you just want to stay in bed all day...this is similar, without the body ache.  It takes every bit of will power you have to get out of bed, even to use the restroom -- let alone go to work, or go for a run.  I also lost a bit of hair...mostly on the right side of my head, where the main beams exited:

Yeah, I know it looks like I just got a bad (or unfinished) haircut, but it's the radiation.  I joke with my radiology tech, Anita, that she should be a hairstylist -- 'Hair by Radiation' or something like that.  Actually, now that I look at it, this style is "in" right now...hmmm...anyway:

But I made it.  

I'll spare you the cheesy parallels -- though the similarities between finishing a marathon and the 42-day treatment cycle are obvious.  It's a marathon of a different sort, and in many ways was more difficult than the toughest of my marathons (Marine Corps 2006, if you're curious).  I couldn't help but celebrate a bit -- and even talked the radiation team into a group photo after my last treatment.  This is me, the radiation mask I wear (see my previous post), and the radiologist/techs who I met with every morning to work their magic.  Anita dahling is on the far left, along with Tammy, me, Theresa, and Jim.  Thanks team!

 

You may also notice that I shaved my head...not only because the beautiful "Haircut by Radiation" photo above isn't in compliance with military regulations, but because there's somewhat of a "rite of passage" there for cancer patients.  If you could see all the children and elderly who go into the treatment rooms before me, or who are waiting when I come out...nearly all of them have lost all of their hair, or have shaved their heads.  Cancer survivors form a very tight-knit family, and this is a rite of passage of sorts...and I was happy to join the club.  

From here, it's back to the waiting game.  The first time, in 2001, we tried surgery alone -- and the cancer returned.  The second time, in 2005, we tried surgery plus 22 round of chemotherapy -- and the cancer returned again.  This time, the third time, we're doing surgery plus chemotherapy plus radiation -- let's hope the tri-fecta will kill this bug!  I'll now return to the National Institutes of Health's National Cancer Institute, where I'll again start the 90-day brain scan routine.  If my scans are clear for a year, I go to scans every six months...and if those are clear after a year, I go to annual scans.  I've never made it that far -- the cancer has always returned first -- but it won't this time!

From a training perspective, I've somehow been able to keep up with the plan.  I started my Rock-and-Roll Seattle training plan on the same day I started radiation, and I'm up to about 10 miles on a long run -- yesterday's run was 9 miles, and I did pretty well, right on 8-minute miles.  I'm on track to do the George Washington 10-Miler next month and the Marine Corps Historic Half in May as training races, followed by Seattle in June.  Right now it also looks like I'll have some company at Seattle -- at least JD and a few others, including some from the Bloggers Against Cancer community.  I'll be setting up a fundraiser, probably through the American Cancer Society or the National Brain Tumor Society...more on that later.

For those looking for an update on the Monkey, she turned one year old yesterday -- and had her first birthday party!  Also her first taste of cake...she LOVED it, of course:

She even got some of the cake in her mouth!

Finally, I'll close with one brief tickler...I got a call from Runner's World last week.  Nothing is finalized yet, but you may see something in the July issue.  Stay tuned!

Radioactive Running

   Radiation has begun, and so has marathon training!  For those most interested in the updates on my training, skip down to the next paragraph...otherwise, prepare for "Radiation 101" (reminiscent of Chemotherapy 101, blogged earlier).  

   In my ten-year battle with brain cancer, I've been through just about everything, including three surgeries, more tests and labs than you can imagine, literally hundreds of MRIs, and 22 rounds of chemotherapy.  However, I've been able to avoid one thing:  radiation.  This time around, I'm not so lucky.  Having removed the tumor mass, the doctors are almost certain that some invisible tumor cells remain, and the only way to get rid of them is to treat them with radiation.  So, here we go -- five days a week for six weeks, a total of 30 treatments.  As I mentioned in a previous blog, the docs at NIH are also using chemotherapy drugs as a radiosensitizer, making the malignant cells more receptive to radiation than the healthy brain cells (trust me, I need every one of them).  So, after starting chemotherapy on Sunday night, I showed up bright an early on Monday morning...

   The radiation machine itself looks pretty timid.  It's like an open MRI, or a half-CT, something like that...here's a photo of the room where my treatments are done:

   

The machine isn't the hard part.  That white thing at the head of the bed is a radiation mask, and that's really the intimidating part.  It conforms precisely to your face, and holds your head perfectly still.  This process takes pretty serious mental control and concentration -- imagine, if you will, a scene from one of those slasher movies.  It's pitch dark.  A man lies on a bed, as if asleep.  Slowly, a man approaches, holding something that looks like a plastic bag or plastic wrap, moving it closer and closer to his face...  Anyway, you get the idea.  When the mask is first placed on your face, it feels exactly like someone has put a plastic bag over your head.  It is incredibly tight -- my face looks like I'm staring into 100-mph winds -- and breathing becomes quite a challenge.  Your first instinct is to panic, but as you try to maintain your composure you realize that you can breathe through small holes under your nose, and if you strain enough to part your lips by a centimeter or so, you can get some air through your mouth as well.  As you fight to control the panic, the mask is bolted onto the table, and the technician leaves you to yourself for about 20 minutes as the radiation machine does its work.  According to the technicians at NIH, about 80 percent of patients must be sedated prior to treatment in order to avoid panic attacks.  Now, four treatments in, I'm getting better at it...but it's still pretty intimidating.  Here's how I look with the mask in place:

The little "plus" signs on the mask align with lasers mounted on the wall (you can barely see one behind the tech) and on the ceiling, which ensure that my head is precisely positioned, and positioned exactly the same way for each treatment.  So, once I'm in the mask, bolted down, and properly aligned and positioned, the tech leaves the room and the radiation machine rotates around my head, occasionally emitting loud buzzes and beeps that I can only assume are wreaking havoc on the rogue tumor cells camped out somewhere in my head.  

The treatment itself only lasts about 15 minutes, after which I'm "unbolted" and on my way.  If there's any question about how tight the mask is, I retain the battle scars from each radiation treatment for about 30 minutes after leaving the hospital.  Like the pattern?  It prompts some interesting questions on the subway...

The main side effect from radiation is fatigue, which is slowly setting in.  I'm also battling the standard gastro-intestinal effects of chemotherapy...the combination will make the next six weeks very interesting!  I'll also develop some surface skin burns (like a sunburn), and will almost certainly lose my hair (which is happening anyway).  Most of the other side-effects from radiation are long term (like 10+ years from now), and can include everything from short-term memory loss, balance issues, cataracts, and more serious things like necrosis and secondary cancers.  With those pleasant thoughts in mind, that's radiation!  Now, on to training...

I'm not sure why I planned it this way, but somehow I started marathon training on the first day of radiation treatment.  I may regret it later, but for now I'm managing fairly well.  I've gotten two runs in this week, just 3 - 4 miles -- and I feel fairly good.  My run on Sunday was the first run I've had since the marathon on November 30th, and I certainly felt it...I haven't gone eight weeks without running since I started this whole running obsession a number of years ago.  Four miles today felt quite a bit better, but I'm in absolutely terrible shape.  Regardless, I should easily be ready for Seattle, with a couple of tune-up races in between -- the George Washington 10-Miler in April and the Marine Corps Half-Marathon in May.  Trust me, I'll be there!

In closing, I have to wish Momo a happy birthday...and my usual shout out to all the bloggers who have checked in on my recovery during the past six months!  You guys (and girls) rock!  Over and out, with a final farewell from The Monkey...

Run, daddy, run!

Surgery, Radiation, and Chemo: My Own "Triathlon."

It's been a while since I provided an update, and I've also neglected commenting on other blogs...things have just been crazy lately.  Recovery is actually going quite well, certainly the fastest and easiest recovery of any of the three surgeries I've had.  The headaches are pretty much gone, the swelling is gone, the only thing that remains is some significant fatigue.  I think I'll be ready to get back to training on the 26th -- and I'm counting down the days!

One of the big questions we've been facing after surgery is whether or not we'd follow surgery with radiation.  Well, I spent eleven hours yesterday at the National Cancer Institute's Center for Cancer Research, most of that time with the chair of the Radiation Oncology Branch.  He's an incredible doctor, and walked me through all of the options patiently and in great detail.  It's a long story, but here's the bottom line:  we're going through with radiation.  Essentially, we tried surgery alone, and that didn't work.  We tried surgery plus chemotherapy, and that didn't work.  We then tried chemotherapy alone, and that didn't work.  The docs at NIH (and at Cedars) are all in general agreement that we have no reason to believe that doing nothing -- "watching and waiting" -- will be successful this time.  Left untreated, they all believe that the tumors will recur, and I tend to agree with them.  Finally, the best time to do radiation is when there are the fewest number of malignant cells to radiate, requiring the least amount of radiation and thereby saving healthy brain tissue from exposure.  Just a month after surgery, there is no better time to start than right now.  So, I start radiation on the 26th of January, and will have treatment five days a week for six weeks.  This particular type of radiation is called intensity-modulated 3-D conformal radiotherapy,  a very precise form of standard IMRT.  I'll also be taking chemotherapy (which serves as a radiosensitizer) at the same time.  So, I have my own little triathlon going -- surgery, radiation, and chemotherapy!

While we're on the topic, if you've been following my blog for a while, you know about my Iron Dreams.  Never one to let my cancer slow me down, I figure what better way to pay tribute to my surgery/radiation/chemo tri-fecta than to follow it with my own triathlon -- in this case, The Nation's Triathlon in September.  It's only an Olympic-distance tri, but it's a start...and the timing is good.  I'll train hard for the Rock-n-Roll Seattle in June, which still leaves me more than two months to get on the bike and in the pool before September.  

In short, I feel good.  My strength is returning, and I'm ready to hit the roads again next Monday.  The time I've gotten to spend with Pooh and Monkey during recovery has been amazing.  The continued support of friends, family, and bloggers has been outstanding -- and I still hope to see some of you in Seattle in June!  Or, perhaps, in DC in September?  Anyone?  Anyone?