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?

Cancer-Free for Christmas

Okay, okay...I've received more e-mails and phone calls than I can count asking for an update, so here it is!

After discharge from the hospital, Pooh and I tried to occupy ourselves in Los Angeles, doing our best to "sight-see" in LA and Beverly Hills on a budget...which is actually quite a challenge. We ended up spending most of our time sitting in bookstores reading and relaxing -- I still fatigue quite easily, and can only go for about an hour before I need to rest or nap for an hour or two. I was even awakened by a security guard in the Thousand Oaks Galleria, who politely informed me that "sleeping wasn't permitted in the mall." I was tempted to take off my skull cap and throw out the brain cancer card, but decided against it...poor guy was just doing his job. Still, it would have been fun. ;-)

One of the great things that helped speed my recovery was a visit from my longtime friend and newly-minted marathoner JD, who flew down from Seattle just to spend some time together. We've been friends for 27 years, and this guy can make time fly. All of a sudden, a week from major brain surgery, I'm singing with the band at a piano bar in Universal Studios:
Strolling the Santa Monica Pier:
Even having our picture taken with Santa:
As a side note, this is particularly bizarre for me, since I never believed in Santa -- as far back as I can remember, I've known that it was mom and dad, and I don't think I've EVER had my picture taken with Santa before. So now, thanks to JD, at the age of 36 I've finally had my picture taken with Santa...and a real Santa at that!

So, after a few days with JD, Monday arrived and we checked back in with the neurosurgeon. He did another exam, looked at the incision to see how things were healing, and gave the approval for the staples to be removed. He also brought in the neuro-oncologist to talk through additional treatment options. The short version of the story is that we've tried surgery alone, and the tumors returned. We then tried surgery followed by 22 rounds of chemo, and the tumors returned again. So, the best alternative at this point is surgery followed by radiation. These alternatives were presented to the Cedars-Sinai Tumor Board, and the votes were about split...some in favor of radiation, some in favor of waiting. The problem is, radiation is normally a "silver bullet," and at my age it's very early to burn that card...given how well I respond to surgery, doing radiation at this point may eliminate an option we'd like to use later on. However, at the same time, radiation makes a lot of sense, since we've now removed the bulk of the cancer, and have a unique opportunity to kill whatever cancerous portions we didn't get with surgery and knock this thing out once and for all. Both the neurosurgeon and the neuro-oncologist, and both Pooh and I, are leaning in favor of radiation. We'll meet with our docs and NIH and get a second opinion, but I suspect we'll follow this surgery with radiation. After those discussions, the staples came out -- ready for the nasty pics? Okay, you've been warned...here they are...before:
During:
After:
The procedure was far less painful than last time, and pretty easy overall. Now, we're safely back in Virginia, reunited with little Monkey (who is now walking, by the way), and happily on the road to recovery.  I still struggle with some pretty significant headaches, and some of the medications cause a bit of nausea and stomach problems, but I really can't complain after all I've been through.  

On the training front, I have to wait about six weeks before I can run again, but that should still leave me enough time to train for the Rock-N-Roll Seattle Marathon in June.  I'm still aiming for that 3:45 that eluded me a few weeks ago!  In other news, it appears that Santa was good to me this year, and a treadmill may be under the tree.  I'm not a fan, but the weather here just isn't as conducive to running as it was in Monterey.  We're very happy -- we're home for Christmas, little Monkey remembered us, I'm unaffected by surgery, and just dealing with a few headaches and minor problems.  The prayers and support of all the bloggers, friends, and family members have been instrumental over the past few weeks -- thank you all so much, and Merry Christmas!

Surgery Report -- From Mike!

I'm back! Yes, I'm out of the hospital and back "on the blog."

First and foremost, THANK YOU to everyone who has thought, prayed, blogged, and communicated with us over the past week or two. The outpouring of support from friends, family, and bloggers has just overwhelmed us, and we never expected to have such an incredible support structure here. Thank you!

I'm back at the hotel, and out of the hospital. As you know from Pooh's blogs, I was discharged from the hospital a day early (yesterday), and I'm doing just fine. So, now you get to hear the story first-hand -- from the guy who actually went through this whole ordeal:

Wednesday, 10 December, 8:00pm. The whole surgery process actually begins the night before, when you're placed on a restricted diet. So, basically nothing to eat or drink after midnight the night before surgery -- not a simple feat for someone who normally eats 4,000+ calories per day. Anyway, I complied...and only complained a few times. In addition to the restricted diet, I have to wash my hair with a wonderful solution called, "Endure 400 Scrub-Stat 4," a 4% solution of "Chlorahexidine Gluconate" used for "surgical hand scrubbing." So, it's not Garnier Fructis, but I've never been very picky anyway, and honestly don't have enough hair for it to matter too much. So, after having one last meal and taking one last shower (does this sound at all like "The Green Mile?"), I headed to bed. Sleeping the night before surgery is always an adventure...I usually don't do much of it, and spend most of the night tossing, thinking, praying, and occasionally nodding off. With a 4:30am wakeup, it's not like I'm sleeping in anyway.

Thursday, 11 December, 5:00am: Check-in time! With a 7:15 surgery time, check-in is two hours prior. We check in at the Cedars-Sinai Medical Center South Tower, and are escorted up to the surgery floor (the 8th) by an orderly. Once checked in on the surgery floor, it's really just a couple hours of waiting...along with about eight other patients, all scheduled for surgery that morning. I was the only brain surgery patient, but there was also one there for back surgery, another for neck surgery, one for intestinal surgery, and a few others. About 6:45am, I'm called back by an attendant, and say my somewhat tearful good-byes to my parents and my wife, all of whom had accompanied me to the OR floor. This is often the toughest part of the whole procedure for me -- what I call "The Walk" (again, reminiscent of The Green Mile"). The walk from the waiting room back to the prep room is actually quite a long one, down a sterile, narrow hallway. The urge to look back over your shoulder is tremendous, and just about everyone around you is crying and walking backwards, catching final glimpses of loved ones. I usually refrain, but this time I did give a brief "thumbs up" to my wife. Thankfully, my buddy LDO (a co-worker and good friend) gave me a coin engraved with the "Put on the full armor of God" verses from Ephesians, which was the only thing I actually took with me on the walk...even my wedding ring stayed with my wife. Back in the prep room, I make a bathroom stop, then strip naked and put on one of the beautiful, multicolored, "fully ventilated" gowns, and get on my gurney. A lengthy interview by the pre-op nurse follows (medical history, allergies, etc), then the anesthesiologist arrives. The anesthesiologist hooks up a regular IV, and starts with a saline flush, then some of the same questions. The anesthesiologist, Dr. Xiang, told me she'd be adding some "good stuff" to the IV now, and I would soon "care a lot less" about what they were doing. Well, that's pretty much the last thing I remember.

Thursday, 11 December, 1230pm: Recovery! After that, the next thing I remember is waking up in the recovery room. This is not a pleasant experience. The complete rush of sensations is totally overwhelming -- from completely comatose to completely aware in a matter of minutes is a big shock to the system. As they slowly bring you back to consciousness, especially after a procedure like mine, I was in a complete rush of seeing if I could feel my feet, move my hands, speak, see, understand, remember, all those things. Still, you're not entirely capable of any of those things, largely due to medications, and anesthesia, but I can't tell...I can't see a thing, but don't know if that's because I don't have my contacts in or because I've lost my vision. I can't move entirely, but I'm also strapped onto the gurney. I can't remember the last eight hours, but I was under general anesthesia...you get the idea. The mental games that go on during this hour or so are pretty bizarre. Slowly, I get possession of my senses, they remove the straps or whatever, I get my glasses, my thoughts clear, and then -- after what seems like forever -- my wife pulls the curtain back. That moment is the one we've both been waiting for for weeks now. I made it -- I'm alive, I'm healthy, I can see/speak/hear/move/remember, and the cancer is gone. At that point, I relax quite a bit, and it becomes a day of alternating between frenzied activity and endless waiting/boredom.
I'll be honest -- Recovery is a miserable place. Two of the other patients in the room with me got sick from the general anesthesia, and were vomiting regularly...an unpleasant experience even when you're feeling your best. I've got two IVs in -- a regular up by my elbow, and an arterial in my wrist. I've also got a Foley catheter, which is tremendously uncomfortable. My head is wrapped tightly in a pressure bandage to keep swelling down, and I've got 50+ staples along the incision in my scalp from ear to ear. I also have those cursed leg compressors on, which inflate every minute or two, and a blood pressure cuff on one arm that takes my blood pressure every five minutes, along with a blood-oxygen monitor on one finger, and EKG leads taped to my chest at about ten different locations. This point, and the next 12 hours, are the hardest parts of the entire ordeal for me. I actually felt surprisingly good -- the headache was worse that I remembered it being, but other than that, I felt fine.

Thursday, 11 December 6:00pm: ICU! The move from Recovery to ICU is a big step for one reason only -- privacy. The Recovery bay is shared with seven other patients, and Cedars' brand-new ICU tower has individual patient rooms. Other than that, it's not too different -- the move to ICU doesn't mean they can remove any leads, monitors, IVs, or anything else, but I've got a room to myself. Visitors still can't stay for more than a few minutes, but it's still a big step up, and it's the first big step to getting classified as a "floor patient" -- one in a regular patient room! I remember the move from Recovery to ICU, across a glass skybridge over Santa Monica Boulevard, looking out over Hollywood Hills and Beverly Hills. It was my first glimpse of the outside world since surgery (there are no windows in Recovery), and it was beautiful.
In all but the most exceptional cases, brain surgery patients must spend at least one night in ICU. This is the part I had been dreading since knowing I'd be going back into surgery -- while the surgery itself is certainly the longest and most miserable part for my family, the one night in ICU is the longest and most miserable part of the entire process for me, the patient. It is impossible to get comfortable -- you have tubes and leads stuck to every part of your body (including some VERY sensitive ones), and the nurses are required to check in on you every hours for a full neuro exam. Checking pupil response, sensory perception, memory, and cognition every hour -- basically, they wake you up, tickle your feet, shine a flashlight in your eyes, make you wave your arms and legs, then take your temperature and blood pressure, then tell you to go back to sleep...and just when you start to nod off...they're back again. Within a few hours, the Foley catheter starts to burn and itch pretty badly -- I'm not sure if that happens to everyone, but when I mentioned it to the nurses, they said it was "completely normal," so I can't be the only one to suffer. Last time, an orderly tripped over it, which was decidedly uncomfortable, so this time, they taped it to my leg...and I'm not sure if that was much better. Fur and tape don't seem to get along well. My headache hadn't subsided much, so I took three Tylenol which brought it down to a comfortable level. Shortly before bed, I took two more just to take the edge off so I could sleep, and tried to get a few minutes of rest in between interruptions. After a long, miserable night, morning arrived, with check-ins from my neurosurgeron and internist, and (thank God) approval to remove the arterial IV, the catheter, and the leg compressors. I still had the blood pressure cuff, regular IV, and EKG leads, but freedom was that much closer!

Friday, 12 December, 7:00pm: A "floor patient!" Okay, Cedars does this right. I don't know if I scored the "frequent customer" card here or what, but somehow I ended up in one of two VIP suites on the patient floor. This room had basically a luxury bed and bathroom, with a whole separate area for friends and family -- dinner table, sofa, and extra bed for anyone who would like to stay. After Recovery and ICU, this was heaven! A "floor patient" is also spared the hourly interruptions, which means sleep is an actual reality...which, by this time, is all I wanted to do anyway. By Friday evening, I was off all pain meds, and only taking those that were required -- a lengthy list of anti-everything, from anti-inflammatories and anti-convulsants to anti-biotics and anti-nausea meds. My diet was still restricted to fluids and clear liquids, although I got a regular lunch of chicken and mashed potatoes shortly after moving to the regular room. By the way, the hospital food at Cedars is quite good...and they also have both a Tully's and a Starbucks, so coffee was abundant -- as soon as it was approved! The whole family joined me in the patient room for the evening, and we had a great time just chatting, breathing a collective sigh of relief that we all may have actually made it through this thing completely unscathed.

Saturday, 13 December, 1200pm: Discharge! Originally scheduled for discharge on Sunday, Dr. Chu mentioned on Friday night that if I had a good night and my vitals were still strong on Saturday morning, there was no reason I couldn't go home on Saturday. This would make me "three-for-three" on early discharges -- all three brain surgeries at Cedars have been followed by discharge a day early. Guess I'm an "old pro" at this stuff! Anyway, Dr. Chu came by with a few of his residents in the morning, removed the wraps and steri-strips, and exposed my beautiful scar...50+ staples, but only some minor swelling over the primary resection site (the right frontal area) and a good shiner to show off. One last neuro exam, and I had the green light! My family showed up shortly thereafter, and we signed official discharge papers an hour or so later.

So, that's pretty much the whole story. Now, Sunday evening, I'm basically back to my old self -- I took another Tylenol last night to help me sleep, but other than that, I haven't needed any pain meds of any kind. They had morphine, vicodin, and codeine all available, but all I took was Tylenol, and I feel just fine. I'm a little unsteady on my feet, and can't turn too quickly, but I'm otherwise completely normal. We have to stick around town for another week or so to get through the "danger zone" of potential bleeding or swelling in the brain or stroke, but once we're through those woods, I'll get the staples out on Monday (the 22nd) and we have flights home scheduled for the 23rd. We should be back with Monkey and home for Christmas!

Again, thanks to everyone for all the prayers and support...and for those who have been wondering, YES, I still plan to come back to full strength in time to run Rock-and-Roll Seattle in June. See you there!

Surgery Update #4

Well, it appears I'm back at the hotel without Mike again, but there is good news on the horizon-actually there has been nothing but good news-Praise God!

Mike was finally transferred from ICU about 7 pm tonight, just as his long awaited dinner arrived. No, he wasn't excited about that. He's been SO hungry since his surgery and, finally, he was able to eat real food, only to have it postponed until after the "move"-how rude! He was also up and walking around this morning (much to my surprise). He had already been able to convince the staff to remove his catheter and part of his IVs. The walking also meant no more leg compressor things. This evening we got him out of the awful hospital gown and into some Duke clothes...that should make him all better!

This evening, after the "move" and dinner, we did laps down the hallway and he is, surprisingly, strong. I think he is even stronger than he was in the first two surgeries. He is begging for coffee, but that's not on the menu yet, hopefully tomorrow. I left him some books and magazines for entertainment. Mike even convinced me to leave his iphone there. I know he's bored silly, so I couldn't resist.

The doctor read the MRI and it appears there is no tumor visible. Also, he said he'd talk to us in the morning about discharging him since he is doing so well. Much to Mike's delight! Mike is quite proud of the fact that Dr. Chu called him his "poster child for brain surgery". He said "all surgeries should go like this." That made Mike feel good. The plan was to discharge him on Sunday, so, this will be the third time he was released a day early (assuming they go ahead and let him go tomorrow). The final pathology won't be done until next week, but they are optimistic about that too.

Mike has absolutely no deficits...sorry for not mentioning that earlier-lack of sleep I think. He is 100% Mike Moyles and we couldn't be more delighted! I truly believe he is acting better after this surgery than the previous 2-could it be that you get "good" at surgery? Hmm..let's not go there! :)

Well, good night to all and thanks once again for your continued support and prayers. Praise God and the next time you get an update it will be from Mike! YAY!

Surgery Update #3

Well, I'm back at the hotel now. Unfortunately, without Mike, but he is still doing quite well.

We finally got him into ICU and I was able to spend some "quality" time with him. I'm not sure if there is such a thing as "quality time" when your loved one is in the hospital, but hey, we'll take it! For those of you who know Mike, let's just say he's back...for those of you who don't, I'll explain! He is joking, trying to entertain anyone who steps into his room, smiling and hating his catheter and IV. Although, he did persuade the RN to take the leg compressor things off for at least an hour, so that made him happy. He's asking about his blog, wanting to make sure I've updated it, making sure I've called everyone that I should have (even naming them by name--good sign!), asking for his phone...not a chance in .... he's getting that yet! I know him TOO well for that trick! He said, "it's just incase I need you for something"... ya, right! :)

His vital signs were good, there is a small concern that his respirations aren't staying stable, but the resident on call said that it was because he was a marathoner and since he didn't need to take as deep a breath as most folks the machine was "confused". Okay, for all you medical folks, I know that's not exactly what the MD said, or the correct medical terms, but I think you get the idea. Once, again he's in TOO good of health for the machines. He's had this problem in the past! He is running a slight temp of about 100, but this too is normal for only less than 24hrs after surgery. He is able to bend his legs some to exercise them...he says he's a bit sore and stiff-can you imagine? His main complaint, other than the catheter and IV, is the headache! Oh, I can't imagine how that feels, but the meds are helping, finally, and hopefully he'll be able to rest some tonight.

I think that's about it for now. I'm sure he'll be "itching" to get on the computer tomorrow, so I'll bet you get a post from him soon. (He made me take a picture of him in ICU to post so that everyone would know he REALLY IS OKAY, but I can't figure it out, so it'll have to wait-sorry!)

Thanks again for all your support!

PS...And moments later, I figured it out...here he is!

Surgery Update #2

Good news! The MD just came out. Mike did well and is stable and in recovery. He will be moved to the ICU in about 2 hours. The tumor appears to still be low grade, but final pathology won't be done until next week. We won't know about deficits until later today. They didn't have to remove all of the right frontal lobe, and we're still able to get clear margins around each tumor (there were two). We should be able to see him in the next few hours, so stay tuned for an update after I see him!