A Long-Overdue Update

•July 9, 2017 • 5 Comments

Well, it has been months since my last blog!  So much has happened, and many have asked for an update.  In my last update, I had just come through the surgery to remove all of the infected hardware.  I’m still without a forehead, but doing very well.  About 4 – 6 weeks after that surgery, I started chemo.  Since my cancer progressed while taking Temozolomide, we’re trying something different this time — PCV.  PCV is a pretty wicked combination of Procarbazine, CCNU (Lomustine), and Vincristine.  Fortunately for me, Vincristine has not shown to be effective against brain cancer, so I’m skipping that one, but am on a pretty regular regimen of Procarbazine and CCNU.  The regimen is essentially one day of CCNU, one week off, two weeks of Procarbazine every day, two weeks off, then start over.  I do that for about 48 weeks, and I’m done.  Due to the missing forehead, we’ll likely take a pause from the chemo in October, to allow the neurosurgeon to reconstruct the skull, then resume chemotherapy after I’ve fully recovered.

The symptoms are quite manageable.  The nausea and vomiting seem to be completely controlled by the medication (mostly Zofran), so that hasn’t been bad at all…just a little queasy.  The biggest problem has been fatigue, and nothing seems to help.  Fatigue caused by chemotherapy seems almost untreatable, unmanageable.  It’s not the “I didn’t get enough sleep last night” kind of fatigue, and it’s not the “I worked out too hard this morning” kind of fatigue.  It’s completely different, and nothing seems to help.  Nothing.  I’ve already completed two rounds, with probably four more to go.  I think it will get worse before it gets better, but right now it’s been quite bearable.

When we restart chemotherapy after the reconstructive surgery in October, we’ll be adding a new technology called Optune.  I mentioned this in one prior blog, but we had to put it on pause due to the infection.  With the infection gone, once the skull is reconstructed, we’ll be able to start again.  This will work in concert with the chemotherapy to prevent any residual cancer from growing or metastasizing (spreading), and does so with very few if any side effects.

The last part of the update is the unexpected career impact.  Just last week, I was informed that this latest recurrence has been ruled by the Air Force to be “inconsistent with continued military service,” and I’ve been medically retired.  I’m on what’s called “terminal leave” at the moment, and for the next month or two, which is essentially time off so that I can find a home and find a job.  Well, I already have the first and don’t plan to seek the second, so it’s just great family time.  I’ll have an official retirement ceremony in September, but for now I’m just relaxing, reading, writing, and speaking.  Stay tuned to see how retired life agrees with me!

Another One in the Books

•February 28, 2017 • 5 Comments

So, we are through with surgery number seven!  Surgery was yesterday afternoon, and I’m now back in a regular patient room at the hospital awaiting discharge.  The surgery was a complete success, and the neurosurgeon was able to remove all of the infected hardware and the old prosthetic. The infection was significantly more advanced than anyone had expected, with a large build up of pus underneath the old prosthetic.  That has all been removed and cleaned, and I’m just now on IV antibiotics for quite some time.  Fortunately, this can be done at home by using what is known as a PICC line. I’ve had one before, and it’s a pretty neat thing that looks a lot like a chemo port, but actually feeds the antibiotics directly into the heart where the heart pumps them throughout the body.  It’s a bit uncomfortable and inconvenient, but it’s better than having to go to the hospital every day for infusions.  Here’s what mine looks like:


As I mentioned in the last post, the neurosurgeon is going to wait to replace the prosthetic until I’m finished with chemo, probably about a year. During that time, I’ll be walking around without a forehead, which comes with its own long list of risks and potential complications.  Also, cutting out the infection also involved removing some of the skin on the forehead…that’s not a problem now since there’s no frontal plate in the way, but when they replace the frontal plane with the new prosthetic, it’s going to be a very tight fit to get the skin to close again.  They’re not talking about skin grafts or any crazy things like that yet, but it is a risk.  I can hardly complain…hey, free facelift!

The road ahead is largely unchanged. I’ll have at home IV infusions for several months to come, probably concurrent with chemotherapy starting in a few weeks, and we don’t yet know how this treatment plan will involve the Optune device.  So, we’re in a holding pattern on that one until we know more. Nothing more to report at this point… Hopefully heading home today, keeping up the antibiotics, and starting chemo soon.  Stay tuned to what looks like it will be a never-ending adventure!

Round Seven

•February 27, 2017 • 6 Comments

Even championship bouts are only five rounds!  Geez…

So if you haven’t been following closely, it’s been quite an adventure recently. After five doctors — including two neurosurgeons and an infectious disease specialist — the consensus is that the hardware holding my prosthetic in place is infected with colonized bacteria. The only way to remove the infection is to remove the hardware, so I’m headed back, today, for surgery #7. 

The adjusted plan is now to remove the prosthetic and all hardware, wait a few weeks, start chemo, do about a year of chemo, then wait a few months, then go back in and rebuild the skull. Again. I’m actually excited about the plan, and literally cannot wait to get this surgery done. The infection has made me so miserable — headache, burning, itching, fever, swelling, the works — that I’m anxious to get the infection out so that I can start healing normally and start treating the actual cancer. 

Surgery is scheduled for 2:00 today, February 27th, at the University of Colorado Hospital in Aurora. It should take about two hours, and I’ll be here at least overnight. The good news is that I think surgery #7 is the one where I get the free set of steak knives…or maybe the gold watch. Can’t wait to see which!

Too Much, Too Soon — And A Slice of Humble Pie

•February 9, 2017 • 8 Comments

Well, it has been a long three weeks!  I’ve owed an update for a while, and a lot has happened since the last post.  In brief:

We got our referral to the University of Colorado Cancer Center in Denver, and met with both a neuroradiologist and neuro-oncologist.  It was an excellent meeting, and I have a lot of confidence in both doctors. The neuro-oncologist recommended trying a different type of chemotherapy, one called PCV, that has a long and well-established track record of preventing brain tumor recurrence. This type of chemotherapy, consisting of Procarbazine, CCNU (Lomustine), and Vincristine, is also highly toxic and normally makes the patient absolutely miserable.  I won’t be doing Vincristine, and the other two can be taken orally, so one of the good things is that I should be able to do all of my chemo at home.

One of the other interesting things the neuro-oncologist recommended was electromagnetic field therapy, a very new treatment that will hopefully take the place of radiation, called Optune.  I encourage you to look at the website, or Google, but it’s a fascinating treatment that actually creates an electromagnetic field inside the patient’s head, creating a situation where when a malignant cell tries to replicate, instead of multiplying, it dies.  There are no real side effects, which is great news, but they recommend the treatment a minimum of 18 hours a day for two years.  That means I’ll wear the device while I am sleeping, working, driving, and yes, running.  I also have to keep my head shaved, but the first side effect of Procarbazine is hair loss, so I might not have to worry about that.

So, we were already to start chemo last Monday, when we ran into a little snag…

Last Saturday the 28th, after my regular long run, by dinner my face was showing considerable swelling, even to the point of one of my eyes almost swelling shut.  Straight to the ER!  The ER doctor was good, but assumed it was an infection, gave me 30 minutes of IV antibiotics, and sent me home with amoxicillin.  The labs and the CT didn’t show any sign of infection, but I was okay with that plan and started the antibiotics that night. Unfortunately, by the time I woke up on Sunday morning, my face has doubled in size, with now both eyes swollen shut, difficulty breathing through my nose, ringing in my ears, and a terrible headache.

Back to the ER…

The second ER doc was very good, and he immediately ruled out infection with another CT

and labs. He admitted that it wasn’t an infection but that he didn’t know what it was, and couldn’t in good conscience discharge me without knowing what was causing the swelling. He called the on-call neurosurgeon, and after about six hours in the emergency room the neurosurgeon was able to conclude that I had a cerebral spinal fluid leak.  This is serious business…untreated, it’s even potentially fatal, or can result in meningitis or hydrocephalus.  While going over medical history, I admitted to the doctor that I had not waited the recommended 4 to 6 weeks before strenuous exercise after surgery. In fact, I didn’t even make it two weeks, getting back into my 13 to 15 mile long run routine just 11 days after surgery. It now seems clear that my aggressiveness (exercise addiction?  Stubbornness?) likely ruptured some of the internal repairs done after surgery, allowing the cerebrospinal fluid to leak out of the skull and into the open area around the eyes and the sinus. Too far, too fast, too soon…I ignored the doctor’s orders and I definitely paid the price.  One slice of that pie, please.  Large slice.

Today, I’ve mostly recovered from the CSF leak, and the biggest issue is my attitude after almost 2 weeks without exercise. I still have a little bit of redness and swelling near the incision, but I am much, much better than I was last weekend.  I have about five more days on another course of antibiotics to get rid of any potential infections, and I’ll start chemotherapy on Monday the 13th. I will then follow up with the neurosurgeon on the 14th, and with the neuro-oncologist on the 22nd. For those following our diet adventures, we will also meet with an oncology dietitian on the 22nd to see how ketogenesis will work into the chemotherapy plan. Procarbazine already has its own long list of dietary restrictions (see here), so we may have to put our ketogenic plans on hold until we are done with chemotherapy.

To be honest, it has been a few of the worst weeks in my almost 18-year battle with brain cancer. The pain and discomfort of the CSF leak, the inability to exercise, and the anxiety and apprehension that goes with re-starting chemotherapy have all combined to put stress at an all-time high. We will persevere — a firm faith, an amazing family to support me, and (in five days) a recovery plan centered on fitness!

The Way Ahead, and the Keto Kid!

•January 16, 2017 • 8 Comments


Well, we have have safely returned to Colorado, and we made it home in time for Christmas!  It was a mixed blessing, with lots of fun (and a few presents) for our little one and a beautiful new layer of snow in the morning, but very few decorations and no tree.  Still, the greatest blessing was being home, and being (mostly) healthy.

Last week I had the staples removed by my regular doc/PA at the base, and put all the necessary paperwork in for the referral to the University of Colorado Cancer Center in Aurora, just south of Denver.  The first of those appointments was last Thursday, where I met with the “Nurse Navigator” (which has to be the coolest job title ever).  The oncology nurse did a complete case history review, copied all the records I brought, and looked at the recommendation from Dr. Chu at Cedars-Sinai.  Dr. Chu recommended a “radiation boost,” followed by some kind of chemotherapy.  This could be temozolomide (temodar), Avastin, or one of the newer therapies like Opdivo or Optune (click the links for more details).  The nurse at UCCC seemed to agree, but it will ultimately be up to the doctor to decide.  I see the actual neuro-oncologist (Dr.Douglas Ney) on Tuesday the 17th, along with several other members of the multi-disciplinary team.

We also met with an oncology dietitian yesterday (Saturday).  This is a registered dietician who has spent at least 2,000 additional hours working specifically with cancer patients, and passed a comprehensive examination covering cancer care.  Most of these dietitians work with cancer patients who are going through active treatment (chemo and/or radiation), working to help them maintain a healthy weight, find foods that they can tolerate without getting sick, and so forth.  However, some — including the one we met with, from Nutrition Foundations — also work with survivors who are trying to prepare their bodies to fight cancer.  She helped us work through a mountain of research (mostly done by Angie) about how diet and nutrition can help fight (and even eliminate) cancer.  The end result is that for now, and until I complete radiation, I am on a strict ketogenic diet.  That is a long, long discussion, but the bottom line is a very low-carb diet that is high in fats and protein, which will eventually help “starve” the tumor of the fuel they need to grow.  It’s far from proven, but the evidence is gathering, and approaching the point of being what I would call conclusive.  There are studies like this one from the National Institutes of Health, as well as many individual stories like this one where a ketogenic diet has helped a patient fight cancer, or has even been shown to reduce tumor size or slow tumor growth.  Probably the best overall article I’ve found on the topic is here, which provides a good (though scholarly) overview of the evidence to date and how the diet actually affects cancer.

So, that’s where we stand.  No more potatoes or bread or pasta for me, and both Angie and I face a steep learning curve when it comes to everything — meal planning, shopping, cooking, eating out, snacking, and how this affects other areas of our lifestyle (fitness) and Ellie.  At the end of the day, if it helps (and the evidence is almost conclusive that it does), it’s worth a try.  I’ll see the neuro-oncologist on Tuesday, and hopefully have more to report.  Until then, bring on the avocados!

Gethsemane

•December 23, 2016 • 16 Comments

I had hoped to have this blog posted on Wednesday, after the final consult with Dr. Chu. However, that consult did not go as planned, and since then we have been simply trying to survive — trying to “deal”.  
Brain cancer comes in various flavors — four, according to most doctors. The World Health Organization categorizes these cancers by grade, resulting in a basic breakdown of:

   Grade I:  low-grade tumors, which are benign or not growing, or growing very slowly. 

   Grade II:  still low-grade, but these tumors grow steadily, though they are still comparatively easy to manage and treat. 

   Grade III:  often hard to differentiate from Grade II, Grade III tumors are more malignant, faster growing, and far more dangerous. 

   Grade IV:  the most aggressive and malignant of all brain tumors, most are of a form called glioblastoma multiforme. These tumors are aggressive, malignant, spread rapidly, and are almost always lethal. 

   For the 17 years that I’ve been fighting brain cancer, my tumors have always been stable at Grade II. Even in cases where most cancers increase in grade as they recur, when mine recurred it always came back at the same grade. When this most recent tumor was removed on the 13th, Dr. Chu’s eyes-on assessment was the same as it’s always been. However, we knew that we wouldn’t get a conclusive ruling on the Grade until the pathology was complete, usually 3 – 5 days after surgery. We got it yesterday, and it was a complete shock to everyone, even the neuropathologist — my cancer had taken a radical upgrade, and this time had recurred as a Grade IV glioblastoma multiforme. We still aren’t sure exactly how to handle this unexpected bad news, and it is truly devastating. My original neurosurgeon, Dr. Keith Black (still the founder and director of the neurosurgery clinic where I go at Cedars), wrote a fascinating book titled, “Brain Surgeon,”and in the opening chapter he characterizes just how weighty this news is. I’ve highlighted a few sections from that opening chapter:



   The most malignant of all brain tumors. Spreads through the brain like wildfire. Expands aggressively, destroying as it grows. No known medical treatments have been able to meaningfully increase the survival of GBM patients. Median survival of 9 – 15 months. Of course, Angie and I knew all of this, and have for years. The moment Dr. Chu shared the final pathology report from the OR, we knew what it meant. We had hoped the surgery would be the end of a long process of dealing with a fourth recurrence, and we now know that it was only the start. A long road remains, and that road likely goes through more chemotherapy, radiation, clinical trials, immunotherapy, and probably all of the above. We thought we had won a small battle with successful surgery, and now face the fact that the fight has only just begun. 

   On the way home from that appointment, my iPhone randomly browsed to a divinely-appointed song, simply called “Gethsemane.”  The words brought tears to both Angie and me:

“I long to walk in Eden with trees in bloom and where the Air is Sweet 

to spend my days in such eyes beside the brook where You will eat with me 

but I have heard you calling and in obedience I go 

to another Garden whose history I know.

Chorus:  Lord for now it’s Gethsemane 

For now that’s where your bringing me

To a place whose agony you’ve known

So because your will is clear

I’ll trust you and I’ll stay right here

If Eden calls tomorrow then those 

Pathways I will roam

But for now, Gethsemane is home.

I won’t compare my suffering with all the pain I know you endured but yet you have used this garden to teach me how 

Surrender makes me yours so strengthen and sustain me

And I will face whatever comes I know that Eden is waiting 

When this night is done

 But for now, it’s Gethsemane

For now that’s where you’re bringing me…”

   The point is, as I once heard a great preacher say — God may call you to walk with Him in the Garden of Eden, or He may call you to cry with Him in the Garden of Gethsemane. Your answer must be the same. And for us, it is — and for now, Gethsemane is home. 

So, What is Brain Surgery Like?

•December 22, 2016 • 2 Comments

Both for the intensely curious and for my own record-keeping, I thought a few of you may be interested to know what actually happens as you go through this process.  As a six-time veteran, I’m probably as much of an “expert” as you’re likely to find…so I’ll share what the experience is like from the patient’s perspective. This will be long and boring for most…but perhaps interesting to a select few!

1. Pre-Op Consult. The first step in each of these events is a pre-operative consult with the neurosurgeon. At this point, you’re not even sure yet that you’re actually going to have surgery, there’s just something driving the need for a consult…a recurrence, an anomaly on a scan, infection, failed chemo, whatever. In this meeting, you meet with at least one or two nurses who check vitals, ask questions, and perform other tests, and often with at least one other neurosurgeon (resident or attending) before actually meeting with your doctor. Standard neurological exams look for any presentable symptoms — usually targeted to find one-side weakness, blurred vision slurred speech, memory deficits, or other issues.  The nurses will give you a long list of instructions about how to proceed prior to surgery, including wonderful details about how and when to eat, shower, and so forth. You have to shower and scrub your scalp with a special soap the night before surgery, and there is no eating or drinking (clear fluids only, if necessary) after midnight the night prior. 

With a good exam and strong vitals, you’re off to see the wizard…or, in this case, the head neurosurgeon (Dr. Chu). The neurosurgeon will show you the most recent scan, tell you what he sees and what he thinks, and if there are other opinions from other neurosurgeons or radiologists or oncologists, will likely share those opinions as well. Together, you agree on a plan of treatment — and I truly do mean together. You can decline surgery. The patient’s opinion matters here. You have a say on how aggressive you want to be in attacking the disease. Do you want to try chemo or radiation again before going straight to surgery?  Do you want to watch it for a few months to establish a growth pattern?  Are you ready to go in now?  In the case of this past week, we already knew coming down that it was growing and aggressive, and had already decided on the telephone consult to proceed with surgery, but it was still a good discussion. We agreed to proceed with surgery, which takes us to the next step of…

2.  Surgical Clearance. Apparently, brain surgery is a pretty big deal, and takes quite a toll on the body. Because of that, internal medicine and gastroenterology have to do a fair bit of lab work and tests to make sure that your body can withstand not just the surgery, but 8 hours of general anesthesia and all the recovery that goes with it. This normally involves a short EKG (only takes about 10 minutes), another neurological exam, a heart stress test, and for most people a chest x-ray (I got to skip that one). This is all accompanied by many vials of blood that are tested in every way — CBC, Liver Panel, etc — and sometimes urine as well (another one I got to skip). This afternoon of fun can be stressful or problematic if you have any health complications or aren’t in good shape, but for me it’s almost fun to play “stump the doc.”  These were the appointments where in prior blogs I was told that they “love my veins” and that I have “an amazing heart.”  So after a few hours with Dr. Samadi, I was pronounced healthy enough for surgery, and Dr. Chu’s office was cleared to put me on the schedule. But before venturing into the skull, you have to take a look inside…

3. Pre-Op MRI. Before making any movement toward surgery, the surgeons need to know what they’re dealing with, and the first step is taking a look inside the brain to see what all the fuss is about. The MRI is just like any other, and for a kid who’s been doing this for 17 years, it’s not much more than a 45-minute nap. However, for many this is still a significant event. It’s loud, uncomfortable, claustrophobic, and generally unpleasant. To reveal malignancies, the neurosurgeon will likely order the MRI “with contrast,” meaning about halfway though the scan, you are pulled out of the machine and given an injection of a chemical called gadolinium, which helps highlight areas in the brain where foreign tissues are active or where the blood-brain barrier has been violated. There are three ways to administer contrast — easy (a shot), hard (an IV), and harder (perfusion). As best I can remember, all of my pre-op scans have been perfusion scans. These scans inject contrast through a large IV (think garden hose), at a very high rate of speed, hoping to expose highlights or enhancements in the brain that other scans may not expose. Better have good, big, strong veins for this one!
If the neurosurgeon suspects that surgery will be necessary, he will order the scan with fiducial markers, which are fancy stickers that are placed on the face and skull during the scan. These stickers show up on the scan, and allow the surgeon to make a firm relationship between the outside and inside of the skull. Not uncomfortable, but a bit intimidating as they draw on you with the purple Sharpie detailing exactly where they want the bone saw to go. By the way, there’s no shower once the fiducials are on…so get that out of the way BEFORE the MRI! With the pre-op consult and scan done, it’s home to get one last meal and try to relax a bit before reporting for surgery the next morning. 

4. Surgery Day!  I rarely sleep much the night before surgery. The fiducial markers make it difficult, not to mention the nerves and hunger and just mental strain. The morning of surgery, you report to patient admissions two hours prior to your appointed surgery time. Just prior, you shower with the special soap they give you, a disinfectant, taking care not to get your head or any of the fiducial markers wet. Patient admissions is as boring as it sounds…consent forms, paperwork, case history, personal information, and more initials and signatures than you can count. Eventually, you are escorted up to the surgery ward (8th floor) by an orderly, who checks you in at the surgery desk and you wait to be called back. This is one of the most difficult parts for me. I don’t know if I’ll wait five minutes or a few hours, but when your name comes up it’s time to go. No long talks or lengthy goodbyes, you’d better have taken care of those already. A quick hug and kiss to wife and daughter, then a short walk back to the pre-anesthesia care unit.  Surrender all your belongings, strip everything, one last bathroom stop, and a thousand more questions and vitals. IV. EKG leads. Meet with the anesthesiologist and neurosurgeon, ensure we are all on the same page, and we are set to go!  In my last five surgeries, this is where my memory of events stops. Something special starts dripping into the IV, and the rest is history. But this time, I was still awake when they took me back to…

5. The OR. It is much smaller than I expect. You see these places on television, from ER to General Hospital, and they look huge. It isn’t. About the size of a standard bedroom, with just enough room for the OR table and doctors to move around it. Bright lights, sterile instruments, and someone straps on a mask…”It’s just pure oxygen right now, Mr. Moyles” they lie. “Breathe deeply!”  

6. Recovery. Most of the unpleasantness takes place after you’re under general anesthesia. The arterial IV is quite uncomfortable, but allows them to monitor heart rate and blood pressure without a cuff. The catheter is obvoiusly uncomfortable, but is already in place when I wake up. The breathing tube is gone, but the effects of it — a swollen and very sore throat — are some of the most obvious side effects of surgery when waking up. Someone is calling my name, gently shaking my shoulders, and telling me “Wake up, it’s all over.”  Slowly, VERY slowly, things begin to materialize, and I’m conscious of the bandages on my head, the people buzzing all around, and a disconcerting number of discomforts…the throat, the dreaded leggings, the IV, the catheter, and numerous other invasions. Once I’m through basic vitals and pupil tests, is pretty much right back to sleep. The pattern of wake/sleep/vitals/sleep continues until I see the most beautiful face in the world (my wife), and beg for my daughter, who appears shortly thereafter.  Several more hours, and I skip the Intensive Care Unit (again) and head to a regular patient room. 

7. Patent Room. It’s really a glorified hotel room, with LOTS of room service (mostly the undesirable kind). It’s a pretty big room, with areas for visitors and cable TV and a private bathroom. Sounds luxurious to some, but it’s brutal. A first tentative walk, with help, holding an IV pole. Regular visits to check vitals, empty the catheter, update meds and IV fluids, and check drainage, scar/incision, and so forth. Family is there most of the time, and the food is surprisingly good. Occupying the time can be a challenge, but the docs and nurses keep you very busy. Unhooking the IV is a big moment, only to be upstaged by removing the catheter (quite painful).  Pain is minimal, and managed well. After about 48 hours after surgery, you’re ready to go home!