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The Carcinoid Cancer Foundation's list of "10 Highlights of the Year 2015" is good news for those of us in the carcinoid and neuroendocrine tumor community. Here's the short version:
  1. Lutetium-177 PRRT was given fast-track designation by the FDA.
  2. Everolimus passed a Phase III trial.
  3. Those with untreatable carcinoid syndrome now have a new medicine.
  4. University of Iowa received a $10.7 million grant to study NETs.
  5. A global study of 2,000 NET patients was undertaken.
  6. NIH found a genetic link to gastrointestinal NETs
  7. The winner of the 2015 Warner Advocacy Award was announced.
  8. NET Cancer Awareness Day was the largest ever.
  9. A new app for NET patients was released.
  10. Various news items were collected into the #10 slot.

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In addition, City of Hope is doing some amazing research. On December 16, Giovanna Imbesi of LACNETS and I got to tour a research lab on campus where molecular biologist Dr. John Williams has recently found ways to literally "bolt on" custom molecules to antibodies. After finding that antibodies have a central cavity, he tested ways to insert a molecular "bolt" into the space where he can fasten on items like drugs or radioactive substances. This technology, called Meditopes, is a cutting-edge method for targeted therapy that may become very significant for cancer treatments in the future. It will allow physicians to precisely target tumors with therapeutic agents, producing minimal side effects. Watch the video and get encouraged!

These are exciting times, when a carcinoid cancer diagnosis is not necessarily a death sentence any longer, but a chronic illness that can not only be managed, but may be curable in the next decade or so if these trends continue. Stay encouraged, and meanwhile, do all you can to take care of yourself through diet, exercise, prayer and faith in God.
 
 
PictureStill walking strong! You can survive cancer.
Here is a response to a friend who sent me links to watch some videos called "The Truth About Cancer" by Ty Bollinger. In this letter I share some principles that guide my thinking about alternative therapies.

Hi [name],
Thanks for the links. I watched the first & second videos, but find them to be a mixed bag. I certainly empathize with Mr. Bollinger's motivation to question things after the loss of his parents to cancer, but I don't think that qualifies him to be an objective spokesperson for "the truth" about cancer. I agree with the need for nutrition and exercise, but many of his statements and those of his expert witnesses don't provide a complete or accurate portrayal of the situation with cancer care, according to my experience.  (Hiram's Law: If you consult enough experts, you can confirm any opinion.)

A lot has changed in cancer therapy over the last 5-10 years. It's not all systemic chemo and radiation now. There are targeted therapies and immunotherapies that are almost miraculous, with more discoveries every week. Any time I hear about "the cancer industry," I cringe. It's so unfair. We may as well talk about the "cavity industry" as if there is a conspiracy between dentists and toothpaste manufacturers, who are determined to keep us in dental chairs to make money for themselves. The doctors I know would be thrilled to see a cure for cancer. My surgeons are ecstatic that I am doing so well. Any researcher who found a cure for cancer would get a Nobel Prize. The conspiracy idea is unfair to many thousands of doctors and researchers who have devoted their lives to the elimination of this scourge. If cancer were cured, the cancer centers and hospitals would have plenty of other ailments to work on. City of Hope, for instance, used to be primarily a tuberculosis treatment center.

One problem is that cancer is complex. You can't put all cancers in one category; they're all different, and patients are all different.  The causes, too, are different: everything from genes to carcinogen exposure to radon gas. That's what makes it so hard to understand and treat. It's simplistic to think that one treatment modality will work for everyone. Every week I read about new insights into cancer from research labs all over the world. Amazing discoveries are coming from understanding the immune system. Science Magazine called immunotherapy the "breakthrough of the year" at the end of 2013, and more discoveries are coming apace. Some patients with advanced melanoma went into complete remission with immunotherapy--but others in the same trial did not. Figuring out the reasons for the difference is a hot area of research right now. It may require personalized medicine to help people. One size does not fit all.

As for the insinuation that the "cancer industry" is opposed to nutrition or alternative medicine, look at what City of Hope is doing:
http://www.cityofhope.org/natural-therapies#Overview
City of Hope and other cancer centers have specialists in nutrition who advise patients on what to eat. That was true in my case. They didn't want me back! They wanted me to stay healthy and successful.

I'm sure there are cases where drug companies are blameworthy; after all, they are businesses, and have to watch their bottom line for their shareholders. But they are also highly regulated by the FDA (perhaps over-regulated); it's a huge debate about how much regulation is appropriate. New therapies in Europe often become available years before the US catches up; I know people who have flown to Sweden or Germany to get treatments still unapproved in America. Clinical trials are often dreadfully slow.  I would be more critical of government regulators than drug companies. If a company could extract a compound from a plant and market it as a cancer cure or preventative, they could make a fortune. In fact, that is what they do; many top drugs are plant derivatives. The injection I get each month is made to mimic a natural hormone inhibitor; it works with no side effects, going right to the tumors. It's like a miracle drug. There's a new compound that was just FDA-approved that does even better.  No side effects! I keep my hair. No nausea. This is terrific.

"Chemotherapy" is way too broad a term. Each drug has its benefits and side effects. Most are targeted now; except in extreme cases, systemic chemo that damages healthy cells is on the downward trend. Radiation therapy has also come a long way. There are many different types and methods now. For my kind of cancer, there are microspheres that can go direct to the tumors and blast them with short-range radiation, leaving healthy liver tissue untouched. Proton beam therapy is coming into prominence now.  It's misleading to lump these treatments into general terms like "chemo and radiation" to scare people.

I agree strongly about the importance of nutrition. That's why I eat a lot of fruits and vegetables that have known cancer-fighting properties. It's also why I exercise every day. It's definitely helping, but it's not a cure; each MRI, those liver tumors are still there. I know people who did everything right and still got cancer, and others who live into old age with bad habits. It's inaccurate to suggest that tumors are just symptoms of bad diet, or that lifestyle changes will attack the root of the cause. Good lifestyle habits are important, but are no guarantee.

I also cringe at the suggestion that people should avoid standard-of-care treatments and go for alternatives only. I know of cases where people died doing that. Steve Jobs, in fact, had my kind of cancer, and died years before his time by going after empty promises about herbal remedies. There are quacks making a living off phony cures (talk about a conspiracy!). An MD in Texas, for instance, has evaded FDA shutdown for many years through legal loopholes, offering a phony cure based on a phony theory that no other  doctor or scientist accepts. I've had well-meaning and intelligent people come to me and offer me books or pamphlets about this-or-that herbal remedy or product, but when you look at the evidence, it's often woefully inadequate... usually based on testimonials. Isolated success stories do not prove effectiveness. Spontaneous remission can occur. It takes controlled trials with large numbers of people to obtain reliable evidence--evidence that overcomes the biases to which we humans are prone. 

My red flags about cancer claims: 1. The" cancer industry" doesn't want you to know this. 2. So-and-so took this and was miraculously cured. 3. Buy my product.

Carcinoid patients who follow the standard of care are often living for decades now, and the numbers continue to improve. It doesn't have to be either-or. I follow the standard of care, but I also eat right and exercise. I urge you to look beyond these videos and follow reputable sources that provide evidence-based information. We each have the responsibility to weigh everything carefully, and hold fast to what is good. In the final analysis, our days are in God's hands. I am convinced that prayer was the main thing that got me through my ordeal.

Thanks again, and blessings to you and [your husband]. Stay healthy!

 
 
PictureOn one of my daily walking routes
As I write about exercise, I realize I'm one of the lucky ones.  I regained my strength after my surgery, and my outlook is good for some years unless my tumors act up again.  Many reading this may not be so fortunate.  All I can say is, you owe it to yourself to strengthen what remains.  Martin Luther King gave memorable advice about perseverance: "If you can't fly then run, if you can't run then walk, if you can't walk then crawl, but whatever you do you have to keep moving forward."  To do less is to quit and die.  Don't quit!  Give it your best shot.

We have remarkably resilient bodies.  The parts of your body that are not cancerous are probably working just fine.  When we strengthen those parts, they share their strength with the afflicted parts.  A diligent program of exercise (whatever you are able to do), helps your immune system get stronger, and your immune system is your best internal cancer fighter.  Exercise is not a cure, but it sure beats quitting!

Numerous scientific studies affirm the value of exercise for cancer patients (recent example).  Exercise does wonders not only to your body, but to your mental attitude as well.  Supported by a healthy diet, you might add precious months or years to your life – perhaps long enough for cutting-edge research to find a cure.  Whether or not that happens, you will have enjoyed those precious days, months, and years much better than if you had quit. Exercise feels good!

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It Starts with Determination

As I lay recovering in the hospital bed, the doctors and nurses told me one of the best things I could do for my recovery was to walk.  I took that to heart.  I couldn't even eat solid food yet or pass gas through my newly shortened intestines, but I didn't wait for them to come and make me walk; I asked them to come and walk me!  It was painful at first, and for the first couple of days they had to pull the IV rack alongside me, but I was determined to walk, walk, and walk some more.  Soon I was pulling the IV rack myself as I walked.  When the surgeons allowed them to remove my IV and drainage tubes, I surprised the nurses by walking unassisted up and down the aisles, even before I could blow the plastic ball in the breathing toy up to the normal level.  By the end of the week, I was walking the entire floor four times in a row at a pretty fast clip.  The amazed nurses cheered me on!

PictureExhilaration!
Make it a Project

When I first got home, I could hardly stand up straight.  I was told I couldn't lift anything, and needed lots of rest.  But I could walk: and so I did.  The first day, I walked up the sidewalk the distance of two houses, then I turned around and walked back.  That was all I could do for the whole day.  The next day, I walked up 3 houses.  The next day 4, then 5, then 6.  I made it a project to add another house each day.  Pretty soon I was adding two at a time, then more.  Gradually I could stand up straighter despite the scar, and my lungs improved.  It took weeks, but I could finally blow the plastic ball up to the top of the tube.  I was feeling much better!

There was hardly a day when I didn't walk.  I kept records of my progress on a spreadsheet.  By March 18, just two weeks after returning home from the hospital, I walked my first mile.  Ten days later I walked 2 miles.  The very next day, I made 3 miles!  Two days later, 4 miles!  It was working.  I could feel my body getting stronger.  I decided that I would walk 2 to 4 miles every day, and I have kept that commitment ever since.  By the end of 2013, I had walked a total of 700 miles, the distance from Los Angeles to Denver!  This year in 5 months I've done 370 miles already.  At this pace, I may break 900 miles in 2014, and if I were to push it, a thousand-mile year is possible, just walking for about an hour a day.

PictureSkydiver Leap, about 55'
What Exercise Can Do

My walking program was so successful, in fact, that less than 4 months out of the hospital, I went backpacking!  I carried my own 45 lb pack 10 miles into the Grand Canyon and back out.  The photo shows me jumping off "Skydiver Leap," about 55 ft high, into a deep pool.  I had not attempted that jump in 11 years, and here I was, now a cancer survivor, well enough to do it at age 62.  My surgeon's eyes widened as I showed him this; "That's insane!" he exclaimed, sharing the astonishment of a phenomenal recovery.

Just two months later, I backpacked again deep into the Sierras, hiking about 20 miles with some non-trivial elevation gain.  I was able to keep up with young adults half my age.  Before my surgery, I worried I would have to give up these strenuous activities.  The benefits of daily exercise, along with my doctors' ongoing care, had given me a new lease on life.

Between these major outings, there were numerous day hikes, some strenuous.  One nearby trail rises 2000' in 2.3 miles.  I made it to the top and back, not too shy of my personal best, within 2 months of returning home.  (In this part of the country, I do have to watch out for rattlesnakes.  I've seen half a dozen on my walks since surgery.)

PictureOne of my 4-mile routes
Make it Varied

To keep my walks from getting monotonous, I mapped out several routes from my home.  Using Google Earth, I measured routes that are 1 mile, 2 miles, 3, 4, 5, and 6.  The picture shows one of my more challenging 4-mile routes.  You can see the trail stretching off into the distance, all the way to the freeway far, far away at right.  I get 700 ft of elevation gain as I go up and down from the hilltops by the powerlines down into the valleys and back up.  Hills are the best exercise for walks.  They give the lungs and muscles a workout.

Other routes take me up sidewalks in the neighborhood.  One benefit is that I have met many neighbors I never knew before!  A one-mile route takes me by all the homes in my housing tract, and I have enjoyed getting to know people.  I carry dog biscuits in my pocket to make friends with their dogs.  When Max and Bailey see me coming, they run to me so fast for their treats that they pull their owners running behind them on the leash!  Nasty barkers are now my friends.  The neighbors have been encouraging when I tell them the reason for my walks.  They smile and cheer me on.

Other routes take me by a shopping mall.  I can walk to a sandwich shop, buy lunch, and walk back in 2 or 3 miles.  Sometimes I drive to nature trails.  Variety helps keep it a fun project, not a boring routine.

PictureIn my preferred attire (less laundry)
Exercise Your Ears, Too

These days, you can take the edge off exercise with a smartphone and headphones.  I listen to music and the radio, and before I know it, my walk is over.  With my water bottle strapped on my belt, a hat, walking poles and my headphones, with a few dog biscuits in my pocket and sometimes an apple or granola bar, I'm off.  On most days my walk takes less than an hour.

I like to go when the sun is low to avoid that southern California sunburn.  When it's warm, and I hike out on nature trails away from people, I prefer going shirtless.  There's fewer sweaty T-shirts to wash, and it feels so good and free with the breeze on the skin.  At first I was self-conscious about that 12" scar on my abdomen, but now I wear it like a badge of honor.  It's my reminder of God's goodness to me to He has let me regain my health so well, so soon after being near death's door.  You appreciate your body so much more when you don't take it for granted!

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Use It or Lose It: Add Some Weight Training

Before the surgery, I had lost a lot of muscle mass.  My arms and chest were skinny and embarrassing.  So with the principle of "strengthen what remains," as soon as I was able to lift things again, I added weight training to my exercise regimen.  Every other day I do bicep curls, and alternate with dumbbell flys.  This shot was taken 7 months ago, and I'm continuing to get bigger each month.  That's another benefit of exercise in "thriving with cancer" -- if you can do it, it improves your sense of well-being, because you're not as embarrassed to look in the mirror as before.  You feel like you're making progress, not wasting away.  Most people have no idea what I'm dealing with unless I tell them.  That's one weird thing about carcinoid cancer.  The title of a new book about carcinoid patients is, "But you look so good!"  Yes, but...

Picture7 months out of surgery
Our Bodies Are Made to Be Strong

The Bible speaks metaphorically of God's "strong right arm" with which He comes to the aid of His people. Strength is honored in the Bible, not as the highest good, but as a good nonetheless.  "Therefore strengthen your feeble arms and weak knees, and make level paths for your feet," Hebrews 12:12-13 says, "so that the lame may not be disabled, but rather healed."  The Great Physician did His part in making you.  Now do your part in strengthening what remains.

PictureA wise man is strong, and a man of understanding increases strength -- Solomon
The Bottom Line

Can you tell I'm an advocate of exercise for cancer patients?  I'm not alone.  Like I said, there are numerous studies backing this up.  It's one of the best things you can do for yourself.

Even so, I realize it's not a cure, and it's not for everyone. A friend in my cancer support group has been an avid bicyclist all her life, but now is in advanced stages of carcinoid cancer.  Her bones are brittle and she is in constant pain.  Exercise is not an option for her.  Others are bedridden, dealing with severe side effects from chemotherapy or radiation.  My heart goes out to them.  There are a dozen people with cancer on my prayer list in various stages.  Even though I encourage them to exercise, I know I don't walk in their shoes.  I can only tell you my story that has worked for me up to this point.  I realize that I'm in a kind of "Indian summer" before the storms of winter hit me, too.  I've got time bombs in my liver that could become active any time. 

But isn't that true for everyone?  No man knows his time.  We're all afflicted with an incurable disease--mortality--that is going to get us eventually.  You could be hit by a bus before the cancer gets you.  Why not make the most of each day?  Your life is like a box; some boxes are bigger, some smaller.  Your box may be small, but you can choose to fill up and fill out the box God put you in.  By doing so, you may get more out of your life than someone in a big box who huddles in the corner.  So don't just sit there and bemoan your fate.  If you can squeeze your hand, exercise your forearm.  If you can breathe, do breathing exercises.  Do whatever your doctors don't forbid in the way of exercise.  You might just surprise them!

 
 
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6.5 months after surgery
In spite of stage 3 neuroendocrine cancer, with a liver riddled with tumors, I'm flying high in my post-surgical recovery, feeling great. Praise God!  It's all due to God's mercy, answers to the prayers of many friends, and the great doctors and surgeons whose expertise and compassion gave me a new lease on life.  As an expression of my gratitude, I decided to do all within my power to aim for healing.  I'll share what I'm learning in a few posts on "thriving with cancer." 

To thrive means I have to form better healthy habits including diet, exercise, and stress avoidance.  In this post I will describe what I'm doing to eat better, knowing that our Creator provided us with amazing compounds for health if we will just put them in our mouths, chew them and swallow them.

I speak not as a health food nut.  I always looked askance at those people.  Me?  For decades, I was a burger, fries and coke kind of guy!  With my busy schedule, I usually only had time for drive-through fast food and prepared meals.  That cancer diagnosis in January, though, was a serious wake-up call.  I knew things had to change.  My doctors and nurses, and a registered dietitian at City of Hope, confirmed what I was learning from my own reading of scientific studies: eating healthy food is one of the best things a cancer patient can do.  

[Important note: your situation may differ depending on type of cancer, surgical history, prognosis, and treatments, so seek the guidance of your oncologist or a registered dietitian familiar with your case. I can only speak for what is working for my situation.  I hope it helps others.]

It's usually impossible to pinpoint the cause of one's cancer.  We all face a multitude of carcinogens throughout life.  Even healthy eaters are exposed to radon from the earth, cosmic rays from space, atmospheric pollutants and other things beyond our control, including the genes we inherited.  Cancer cells form every day in our bodies but – and this is the key – our immune systems are usually effective at stopping them.  Immunotherapy is one of the hottest topics in cancer treatment now.  I heard on the news about a Phase 3 trial underway that trains a patient's own immune cells to fight the cancer. It looks very promising.  But there are also things we can do right now to help our immune systems with the foods we eat.  Why not arm the troops in your body that are defending you?
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MY SUPERFOOD SALAD
Information on the cancer-fighting "superfoods" (blueberries, onions, tomatoes etc.) is readily available on reliable internet websites or from your doctor or a registered dietitian.  (Note: don't trust someone who calls him/herself a "nutritionist" especially if they want to sell you their products.  Registered dietitians have to complete medical training.)  The key is to add a variety of raw, unprocessed fruits and vegetables to your diet.  "Eat the rainbow" of veggies: the reds, purples, yellows, oranges and greens are indicative of cancer-fighting phytochemicals (plant molecules) that promote the immune system and overall good health.  Don't get it processed; go for the real food, raw and natural the way God created it.

You may dislike raw vegetables because they taste bland or take a long time to chew. Here's what I do to keep it simple and enjoyable.  I bought an inexpensive KitchenAid food chopper (about $32).  I bought a box of Debbie Meyer Green Bags that keep produce fresh.  In the grocery store, I scour the produce department for a variety of multi-colored vegetables and greens, the more the better (see recipe below).  Look especially for the cruciferous vegetables like red cabbage, broccoli, and brussels sprouts; onions, tomatoes and mushrooms are also good superfoods.  I bring them home, bag them, and start chopping, preparing enough for about 3 days.  Mix them all in a bowl, add a few raisins and dried fruits before serving to sweeten the mix, and presto!  You have an easy-to-eat, ready-to-use superfood salad.  It actually tastes great as a snack or meal, even without any dressing.  You can add spoonfuls of the mix to a breakfast burrito with turkey and egg, to sandwiches, tuna, chopped chicken, and to many other meals.  Often, though, I just shovel it in while working at the computer or stopping to eat a snack.  It requires less chewing and is quite delicious.  [Note: I've heard that some chewing helps activate the healthy molecules.]

Fruits don't work as well in a chopper, so I eat them raw: pears, apples, bananas, blueberries (in yogurt), nectarines, strawberries, blackberries, grapes, watermelon, canteloupe, and more.  I juice fruits and vegetables sometimes, but it's usually better to eat them raw  I also eat mashed potatoes or yams with the skins included.  You can get frozen vegetables now in packages that steam-cook them in the microwave, keeping more nutrients in.  However you do it, include more fruits and vegetables in your diet.  If you like nuts, they are great, especially walnuts and almonds.  Crushed walnuts can be a topping for a small dish of ice cream.  Unsalted nutty trail mix with raisins is a good snack.  Tomatoes don't chop well, but you can cut pieces of them into your mix, or add tomatoes to sandwiches with leafy greens.  I didn't realize how good they taste on nut butter sandwiches.  Use whole wheat bread or sprout bread, and try almond butter or sunflower seed butter in addition to peanut butter.  For snacks, almonds and raisins coated with dark chocolate are OK in moderation.  Instead of white sugar, try stevia or honey.

It takes about 3 weeks to get accustomed to a dietary change.  A lot of it is attitude and commitment.  My dad used to say, "Happiness comes from liking the right things."  Train your mind by thinking of all the benefits you will enjoy, make it a commitment, and start.  You'll be surprised at how soon the old desires will fall off, and you will like the good stuff.  I feel I have more energy since I started eating better.  My weight is also stable, and my blood pressure is good.

I'm not advocating a total vegan diet--just adding more to your day.  It's OK to occasionally indulge your favorite comfort foods.  A little ice cream, chocolate, or a cookie will not hurt, so don't let guilt defeat your commitment.  I eat unprocessed chicken, fish and eggs (I've sworn off of red meat, even if a little won't hurt).  You can still eat other things, but I encourage you to make the good food the priority and learn to enjoy what will fight your cancer (or prevent it).  I also doubt the value of supplements unless prescribed by your oncologist.  That's another story; people have strong opinions about them, but beware of anyone seeking to sell you cures for cancer with a pill or special herbal mix.  Even if you believe in those things, they are no substitute for eating right.  One spice that seems to have solid science behind it is turmeric.  I sprinkle it on chicken, mashed potatoes and other things whenever I can.

Who knows if my superfood suggestions will aid your cancer recovery?  It certainly can't hurt, and it might help--in more ways than one.  Not only does it put cancer-fighting compounds into action in your body, it's something you can do to take charge of your situation.  A good mental attitude is part of your treatment.  It makes you feel more in control, less helpless.  As I pray over my healthy food, I thank God for all the amazing plants He gives us, and ask that all those phytochemicals He created will go to work against my tumors.  That boosts my mood, too.

RECIPE
Here are some of the vegetables that go into my superfood mix: kale, swiss chard, collard greens, red-leaf lettuce, turnip greens, spinach, celery, red onion, different kinds of squash, cucumber, bell peppers (red), radish, purple cabbage, corn (cooked), broccoli, brussels sprouts, bok choy, carrots, mushrooms.  Add cut tomatoes.
Sweeten with raisins, dried blueberries, dried pomegranates, dried mixed fruit, or honey.
Stir and serve!  
 
 
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Standing by my cubicle where I worked at JPL for 14 years
Since at least 2008, I've had mysterious headaches that have grown in frequency and intensity.  My doctor said it was just stress.  True, I had a lot going on in my life: work and several ministries that kept me very busy.  Still, I sensed that there must a physical cause for these headaches, and I needed to know what it was.  

So we experimented with all kinds of medicines.  No luck.  He ordered an MRI of my skull; nothing specific related to headaches.  He sent me to a neurologist.  The first neurologist wasn't much help.  It could be this, it could be that, it could be a combination.  My cousin, a radiologist, gave me an MRI with higher resolution; still nothing: a possible tumor seen in the earlier MRI was only a tangle of blood vessels.  

So I went to a neurological institute.  The EEG looked fine.  My headaches didn't fit any of the typical classifications: stress, migraine, cluster.  They would come on and force me to lie down for anywhere from a half hour to 2 hours, usually once or twice a day.  Two neurologists at the institute were baffled after more medications had no effect.

In March 2012 at the courthouse, my attorney said, "Dave, did you know your face is beet red?"  No, I didn't.  That was the next clue.  I found that many times after eating, my face would get flushed.  I saw another neurologist my attorney knew; but once again, there was no definitive diagnosis.  We tried a really high-res skull MRI, but once again, no smoking gun was found in my brain.  He even suggested botox injections in my forehead might work.  I'm glad I didn't try that.

In late July, I had a bout of food poisoning that produced stomach pains and diarrhea.  My doctor gave me an antiobiotic that seemed to work after a week, but the diarrhea came back periodically.  That was another clue. By this time, I really wanted to know what was happening to me, so I went to a headache specialist, whose whole practice is curing headaches.  We tried an MRI of the whole spine, in case there was a leak of cerebrospinal fluid. Nothing definitive there.  Then for some reason he requested a 24-hour urine sample.  Something unusual turned up: serotonin levels that were four times normal.  He ordered a follow-up with a restricted diet; same thing.

I began reading about what can cause these symptoms.  That's where I first heard of carcinoid syndrome: a rare kind of neuroendocrine tumor, usually in the gut, that releases excess serotonin or other hormones.  The descriptions were somewhat alarming; it's usually slow growing but progressive, but can be cured if the tumor can be removed before it spreads to the liver.  The headache specialist and I wanted to "rule that out" if we could.  So he sent me to an endocrinologist.

The endocrinologist assured me that it was probably not carcinoid.  After all, it's rare; he had only encountered 4 cases in his 12 years of practice, and my hormone levels didn't seem as high as others.  More blood tests confirmed, though, that markers for carcinoid tumor were present.  He sent me to a gastroenterologist in November for a colonoscopy.  That produced a basically clean bill of health: a couple of benign polyps, but no tumor in the colon or upper GI tract as far as the duodenum. 

Still, the symptoms continued.  The endocrinologist said the only way to be sure would be with a CT scan.  On January 10 of this year, I went in for that.  The radiologist report came back the next day:

Enhancing mid mesenteric base ill-defined mass with extensive desmoplastic reaction and lymphadenopathy at the level of  the origin of the inferior mesenteric artery/L3 is  identified. The bulk of the mass measures approximately 35 x 20 x 30 mm.  Desmoplastic reaction causes significant retraction and thickening of the subjacent small loops of bowel.  There is·also innumerable metastatic hepatic lesions too numerous to count. The largest metastatic deposit is in lateral segment of the left lobe of the liver measuring approximately 25 x 25 mm. Differential for these findings include metastatic neuroendocrine neoplasm such as high-grade carcinoid tumor.

My endocrinologist called me in immediately.  I now had the physical cause of my headaches.  The bad news was, it was cancer.  (Note: "neoplasm" means cancer).   Not only was there a large tumor pressing on my small intestine, there were innumerable tumors, "too numerous to count" in my liver.  I was now his carcinoid case #5.

I was devastated.  I went home and cried.  For the next several days, I would spontaneously choke up and could not hold back the tears.  I could be perfectly fine one moment, then crying like a baby the next.  My MD cousin spoke with me for an hour on the phone about what I could expect, and said that I should prepare for bouts of depression.  I showed the gastroenterologist the report, and he furrowed his brow, saying, "I'm so sorry.   It's progressive, you know."  

I tell you my story so that you learn to pay attention to your body. During the years my doctor was experimenting with every known headache medicine, or telling me it was stress, precious time was wasted.  I knew there had to be a physical cause.  Something was wrong; I could feel it.  Those headaches were not normal. I had dealt well with stress all my life without headaches.  If that primary tumor had been found early on, I could have had hope of a cure, but once it spread to the liver, my hopes diminished rapidly.  Even if most of the tumors can get removed in my surgery 3 days from now, it's unlikely the surgeon can get them all-- and they come back.

Of course we can get paranoid or hypochondriac, but I wish now I had insisted on a scan earlier.  Who would have expected something in my gut to cause headaches, though?  At the time, none of 8 doctors thought of it.

I also wonder if there had been anything I could have done to prevent it.  I admit to having been a fast-food junkie for years: burgers, fries, cokes have been a mainstay, even though I exercise often.  Yet there are people who live healthy and get cancer, and obese people who live long.  Nothing is guaranteed.  One thing I started immediately, though, is a radical change in my diet.  No more red meat and sugar; it's all fruits and vegetables and limited amounts of white meat.  I'm taking seriously the reputable claims about proper diet helping the immune system fight cancer (since we all have incipient cancer cells in our bodies).  I'm reading up on anything I can do to fight this, even if the eventual outcome is grim.

This brings us to the mystery of God's will.  There are things we can do, and should do, to stay healthy, but God works His plans for us invisibly in the background, for our eventual good in heaven, no matter what we decide.  Sometimes God calls us to suffer, or educates us on weak spots in our lives by forcing a change of direction.  I've always been the guy in charge, leading the pack, making my plans, serving God by my own choice.  Now, I am subject to forces beyond my control.  In a few days, I will be submitting my body to surgeons who will cut me open while I'm asleep.  I can't give them any help or advice.  My survival depends on them -- ultimately, on the Lord working through them.  After that, the best I can expect is a few more years of productive life, living with my carcinoid syndrome, injecting myself with octreotide to suppress the symptoms until the cancer catches up with me some day.  And there are worse outcomes you can imagine anytime undergoing major surgery.

Between tears, I've been ashamed.  Lots of people get cancer--even children.  I've had a really good life for 62 years.  I have eternal life in Christ; what is there to be afraid of?  I've thought about times when I didn't show enough empathy with those getting bad health news.  I think about all the saints through the ages who suffered martyrdom, and fates far worse than mine.  And intellectually, I know all the theological answers about God's will, the purposes of suffering, the right responses (after all, I helped on The Case for Faith).  I can tell you, though, when it hits you in the gut, your emotions can still overwhelm what you know in your head.  The first few weeks were the hardest.  Lately I've been getting more of a grip, in no small part to the outpourings of encouragement and support from friends and family far and wide.  That's another new trail for me; accepting sympathy.  Larry Burkett's book Nothing to Fear, with his own story of facing cancer, has been helpful in guiding my attitudes away from fear and despair to confidence and hope.

In a way, I've been blessed by this bad news.  I now know what will probably take me down, and I have some time to prepare.  I'd rather know than drop unexpectedly of a massive heart attack, or fade away with dementia as both of my parents did.  It's causing me to focus on the things that matter in life: my walk with God, my spiritual influence on others.  I can't take time for granted any more.  I probably won't live to see my 70th birthday.  But that's OK; every day is a gift, and I've received plenty of gifts already.

Every one of us has a terminal illness: it's called living in a sin-cursed world.  We all know we're going to die; we just don't know when.  We avoid dwelling on it.  But if you knew, like me, that you had maybe 5-8 years, or potentially a few days, what would you change?  I encourage you to think hard about that.  Start living like this year will be your last.  Make every day count.  If you're not on the right path, I urge you to follow the signs to the trailhead right now.  If you are, remember the old saying: "Only one life; 'twill soon be past.  Only what's done for Christ will last."  Thanks for your prayers, and may God bless you on your trails and trials.