Monday, March 26, 2012

The obvious answer doesn't always work

Man, has it really been that long since I updated this?  Sounds like it is time to give everyone a quick status update.

I have consulted with a local Gastroenterologist to see if we could find out what was causing the diarrhea that I have been experiencing.  Carcinoid cancer often causes us noids to have diarrhea due to the influence of the metastases that are in the liver and I have long thought that this is why I spend so much time in the bathroom.  Well, increased dosages of sandostatin have not controlled the symptoms so we have started looking for alternate explanations.

My GI doc proposed that I may have small bowel overgrowth of bacteria.  Your intestines have immense numbers of bacteria to aid in digestion (bacteria actually outnumber the number of 'human' cells in your body) but most of these bacteria are located in your large intestine.  For some folks who have had small bowel surgery, the number of bacteria in your small bowel gets seriously out of whack and lead to dumping into your large intestine and, thus, diarrhea.

So, we started on some antibiotics to kill off all the bacteria in the bowel and then went to regrow the large intestine flora with some probiotics.  Just as I finished the antibiotics about 5 weeks ago, I started to get very sick.  I had trouble keeping food down and had what appeared to be the symptoms of a small bowel obstruction.

After a couple of weeks of this, missing some work, some skiing including the 2011-2012 ski patrol skills test, I am finally back to 'normal' (minus 10 pounds or so).  This means I am back to 'normal' diarrhea but at least I am able to eat normally and have stabilized my weight loss.

Moving forward from this, we still need to find out what is going on since the simple answer was not the solution to the bowel problem.  I will be doing a 48hour stool collection (yes, it is as fun as it sounds) and the GI doc will be analyzing the output for volume, fat levels, electrolyte levels and other details to see if we can find the reason for the diarrhea.

I had my twice yearly CT scan about on 3/23 and got mostly the same results on it that I have gotten for some time.  Masses in the liver, messentary, and pelvis are continuing to demonstrate their slow growth and the small (3mm) lesion in the lung has been stable for some time.  The one new development is that there appears to be a mass around the right ureter that is starting to impinge on flow from the right kidney to the bladder.  I have not talked to the Dr. about this but my limited research on the web says that this can be addressed non surgically to some extent by insertion of a stent.  If nothing else, it is not an urgent condition at this point.

Other than that, life is good.  10 pounds less will make the Deer Creek Challenge a bit more doable.  Ski season has sucked this year with Copper Mountain snowfall about 80 inches behind normal and 40 inches behind the worst I have on record for the last 7 years.  After the awesomeness that was last years snowfall, I shouldn't complain but I will anyway.

The Run For Hope is currently scheduled for August 4 and we will be there in force once again with as many people in Team Ron as possible.  My wife is also planning a benefit dinner mid summer this year with the proceeds going to fund carcinoid research.  I would love to see many of you at one or the other event!

Thursday, January 5, 2012

Current Roadmap

Happy 2012 everyone!  Stephanie and I started off the year with a flight to Des Moines Iowa and then a short 2hr drive to Iowa City to see Dr. O'Dorisio at the University of Iowa.  I have been seeing Dr. Odo for about 6 years now as he is one of the leading experts in carcinoid cancer and sees hundreds of carcinoid patients a year as compared to the two that my doctor in Colorado Springs sees.  Obviously, seeing more patients gives a doctor a leg up on diagnosis and treatment as he has significantly more experience.

We met this year to discuss what the path forward is going to look like.  4 months ago, Dr. Odo said that when we met, it would be with an intent to treat since one of my blood markers had increased 4 fold over the past 9 months.  At the hospital, I had a repeat of the ultrasound scan I had a year ago and my tumor burden in the liver has increased from less than 10% to 10% which is a small increase.


I wanted to explore the options available and see what the best choice was at this point in time.  Obviously, the tumors are not taking over any of the major organs of my body but that is not the only thing that needs to be addressed with the disease.


The worst part of my disease from a day to day point of view is the carcinoid syndrome which manifests itself in two ways for me.  The first, less annoying manifestation is flushing where my head and upper body will turn red and I will feel heat in my face.  This often appears after periods of exceptional exertion and is a bit annoying but not too inconvenient.

If you see me at work, I generally flush about 90 seconds after hiking the stairs from the basement to the 2nd floor (4 flights of stairs).  At hockey, I generally flush towards the end of a rest on the bench after a shift on the ice when I am skating out rather than playing goal.  When playing goal, I frequently flush just a little while after defensive breakdown in our own zone.


The second manifestation is diarrhea.  This is inconvenient and is certainly more annoying.  I generally have to plan where I am and where the bathrooms are going to be just in case the syndrome creates a critical situation.  We have tried increasing the dosage of sandostatin that I receive to see if that can help reduce the diarrhea but it has not been successful.  Dr. Odo has given me a prescription for another medication (Cyproheptadine Hydrochloride Syrup) that we will try and I will also make an appointment with a gastrointestinal doctor too see if there may be a non carcinoid reason for the diarrhea.

If neither of these attempts are successful we may attempt a treatment of SirSpheres to the lobe of the liver with the greatest tumor burden.  The hope is that killing some of the tumors will reduce the amount of syndrome that I experience.


What comes after that?  Well, there is a treatment that has been successfully applied in Europe for the past 15 years called Peptide Receptor RadioNucleotide Treatment (PPRNT).  This treatment (also sometimes shortened to PPRT) is not yet FDA approved in the United States although there is a doctor providing this treatment in Texas for the low, low price of $60,000.  Alternatively, the same treatment can be had in Basel Switzerland (and Rotterdam and Bad Berka and...) for about $20,000 including travel and lodging!


What is even better is that Dr. Odo is trying to get this treatment approved in the United States and he has one of the six facilities that should have it.   Dr. Odo's hope is that the treatment will be available in the next year although he has been saying this for about three years.  PPRNT is another treatment where radiation is tagged to a key that fits a lock in the tumor.  This makes me glow for a period of time but the end result is that the treatment can give another 3 years of progression free life.


Of course, there are problems with the treatment in that there is collateral damage from the radiation and the primary casualties are the liver and the kidneys.  The treatment can then be repeated as long as there is sufficient kidney and liver function to survive the treatment.  The liver will regenerate but the kidneys are another matter.  Unfortunately, there is no way to prevent injuring the kidneys so we need to be careful not to use too much of this treatment.


Overall, things look relatively positive for me continuing to annoy all of you for years to come!

Saturday, December 24, 2011

It is time to live deliberately

Another guest post from my friend Doug Banker.  Doug and I view cancer diagnosis and post treatment very similarly.  Doug was diagnosed with Prostate cancer a few years ago and has been enjoying the life changing experience that is the wakeup call with that message:

Yep, cancer sucks, from the initial diagnosis through treatment, cancer is definitely a life-changer.  It forces us to deal with some pretty hard realities.  It forces us to deal with our own mortality.  But, throughout the process there can be very positive aspects.  One of my favorite quotes is from Henry David Thoreau:

I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived.
Henry David Thoreau, Walden (1854) 

Poor Thoreau, he clearly never made it to Colorado.  I adapted the first line to read:

I went to the mountains because I wished to live deliberately…

The important thing here is that I have no intention of discovering when it comes time to die that I had not lived.  With the help of a few friends, cancer changed my life for the better.  My camera and I have spent a lot more time in the mountains; on foot; on bike; on skis; on snowshoes.  I’m grateful for the awakening…not for the disease.  But, at this stage, I plan on dying from something else.  It may be a different cancer, but at least it won’t be this one.

I guess I really am fortunate mine was caught early.  I have a young friend (about 28) named Meghan.  She is in the final stages of her cancer and probably doesn’t have long.  It doesn’t seem fair.

Or an old work acquaintance, Mark, who had brain cancer and lasted two years.  It doesn’t seem fair.  

Or a former boss, Carl, who was diagnosed with a lymphatic cancer and only lasted two weeks.  It doesn’t seem fair.

Why am I going to live when others are not?  I feel guilty about that, especially for Meghan who has so much to live for and should have had so much time. 

Yes, I have been lucky.  And, when it comes time for me to die I will NOT discover that I had not lived.  Thanks to my friends for that one!

Wednesday, December 7, 2011

Some Initial Thoughts from a Fellow Cancer Patient

A friend went through his initial cancer diagnosis a few years ago and wanted to post a few words about his journey with cancer:

Hi all.  Ron has graciously agreed to allow me to share some thoughts on my experience with cancer.  Just so you all know (including you, Ron), that Ron has been my mentor when it comes to dealing with cancer.  Even though our cancers are entirely different, he provided me with great advice when I needed it most.  I take the opportunity to do the same for others every chance I get and always make sure they know that it was Ron who helped me, and they, in turn, are bound to help others when needed. 

Just a little background.  Four years ago I was diagnosed with Prostate Cancer, the number two cancer killer in men (lung cancer is number one).   To make a long story short, the discovery, diagnosis, treatment, and rehab took about a year and a half.  I consider myself lucky.  We caught mine early but only because I was proactive.  I always had good physical exams…never any problems.  After I retired from the Air Force I neglected getting any kind of physical for the next seven years.

I always had pretty comprehensive flight physicals with never any problems and I became complacent…until an old roommate of mine was diagnosed.  I decided I should get checked.  Again, everything was normal.  As I was leaving the office I said “Hey, how about a PSA test, I’ve never had one”.  My doctor was surprised and said “sure, I’ll order you one”.  Well, it came back elevated.  I was referred to a specialist who immediately wanted to do a biopsy.  I thought that was a little premature so sought another opinion.  The second specialist said there are other things that can cause increased levels of PSA in the blood, like a low-grade infection.  Let’s treat for that and see what happens.  Well, the PSA came down.  He said to get it checked again in 3 or 4 months.

I did and it was elevated again.  Back to the first specialist for the biopsy…not a fun procedure, by the way.  Anyway, the biopsy confirmed the cancer.  The bottom line here is that even though the PSA test is not perfect, neither is the physical exam.  They are just indicators.  If I had just gone with the physical exam and not asked for a PSA test, my cancer would still be cooking.   So, don’t just go with the convenient answer or the standard exam.  Stay on top of your own health especially if you have a family history. 

I had a radical prostatectomy on February 22nd, 2008.  Pathology showed the margins to be clear which means the cancer did not get outside the gland…very good news.  Most men that die from Prostate Cancer do so because it went too long undetected.  The recovery was long, I went 4 weeks without working.  The rehab went ok…a few issues here and there but, for the most part, everything is fine…actually, some things are even better…but I won’t go into that.  In about 14 more months I’ll be declared “cancer free”…a significant milestone for me…I’ll be able to start donating blood again!

I think this is enough for now.  If it’s OK with Ron, I’d like to do a couple more posts…more along the lines of what he has done…how cancer changes our lives, how we learn to deal with it, and how we think about the future. 

Tuesday, December 6, 2011

You are dying too

One of the great truths of our lives is that we start dying on the day we are born.  This isn't something we like to think about and many of us live our lives as if we are going to live forever.  Steve Jobs recently died of a cancer that is very similar to mine and, in the commencement speech he gave in 2005 at Stanford, Steve said that every morning, he would look in the mirror and ask himself this question: "If today were the last day of my life, would I want to do what I am about to do today?"  If the answer to this question was no for too many days in a row, Steve knew he needed to change things.

The intent of this question was not to say that every day has to be something that is on your bucket list but you can't go on living day after day, doing things you would regret if it were your last day.  It is getting close to the end of the year and many people work for companies that have use it or lose it leave policies.  If you are donating vacation time back to your company you need to really be thinking about what your priorities are throughout the year.  It is certainly possible that you do get your greatest joy out of your work but if that is not the case, what are you doing NOT spending time away from work?

There are so many bumper stickers of the type "a bad day fishing is better that a good day at work" where you can replace fishing with hockey, skiing, golfing, or any other recreation.  The way I like to think about it is to ask myself the question "In one year, would I look back at today and be glad I went to work or would I look back and be glad I hit that 6" dump of powder at the ski slope?"  If the answer to this question too often is regret over going to work and you have the option, make sure you enjoy your life!  I enjoy my job most days but there are nowhere near as many days I look back upon with as much fondness as the days I take off with friends or family.

Life is short, often much shorter than we thought it was going to be.  In some ways, I am fortunate in that my cancer has made me focus much more on what is truly important in life.  Yes, I am dying and it may be my cancer might be that does me in.  You are dying as well.  Make sure you are living at the same time.

Tuesday, November 15, 2011

Talking About Cancer: Knowledge, Friendship, And Support


The following is a guest post by David Haas who has been blogging about cancer survival and has some thoughts that match much of my path through dealing with this disease.  Everyone needs to find their way to tolerate this disease and work their way through it.  I started this blog as a bit of a release for me and the thoughts that bounce around my head about tolerating cancer and it is some of my therapy.



Organizations like the American Cancer Society have several programs and services to help cancer patients understand their illness, manage their treatment, and get assistance. These resources make it a little easier for patients to find information, gain perspective, and receive emotional support at a time when they often feel lost and alone.

Cancer Survivor Networks

Whether someone chooses a community
support group or an online survivors network, camaraderie through cancer is invaluable. All cancer patients need support, whether they are facing breast surgery, rare mesothelioma, or any other cancer. Survivor networks celebrate life, and each other, by sharing knowledge, resources, and personal stories.

Talking about cancer and writing about it are extremely important practices. Although many cancers can now be treated or cured if discovered early, any cancer diagnosis sets off an emotional crisis. For some, cancer is the hardest, most frightening challenge of their life.

There is no right or wrong way to deal with cancer, but talking about it can help tremendously. Most support systems include a patient’s doctor, spouse, family, friends and, maybe, colleagues. But nothing beats talking about cancer with other survivors -- people who have endured the experience themselves, and survived.

Benefits Of Talking About Cancer

According to
Macmillan Cancer Support a London cancer support community, talking about cancer gives people a measure of control. Discussing their fears and frustrations with cancer survivors helps them gain a better understanding of their own situation.

Support groups help patients find answers and make decisions based on knowledge from people who have “been there.” Sometimes, talking about a particular worry keeps it from growing bigger than it really is. Most of all, talking creates a bond between people who care, appreciate, and support one another.

Benefits Of Writing About Cancer

Words can be healing, whether they are spoken or written. For some people, writing about cancer is easier than talking about it in person. This is one of the reasons online support networks are so popular today.

Writing about emotions is therapeutic, and cancer patients can utilize this therapy through discussion boards, chat rooms, blog posts, email, and more. Internet support groups allow people to communicate their feelings any time of day or night. They also allow anonymity, which is a more comfortable option for many people.

However cancer patients choose to express their feelings and experiences, the important thing is that they do so. Talking about their illness, journaling about it, and participating in cancer survivor networks are excellent ways to cope with illness, develop friendships, and support one another.

Friday, November 4, 2011

Why me?

Everyone who suffers a significant tragedy in their life has asked themselves this question.  It doesn't matter if it is the death of a loved one, a financial setback, the loss of a job, or, as in my case, it is receiving an incurable cancer diagnosis.

Harold Kushner, a conservative rabbi addressed this question directly in his book "When Bad Things Happen to Good People" as his response to his own child's death at the age of 14.  I fight with this question continually because it seems so unfair that something so bad happened to me and my loved ones.

I like to think I am a good person and I don't feel I have done anything obviously bad enough to warrant this sentence.  I am a Christian and have lived my life in what I believe to be a mostly Godly fashion although I know I frequently fall short.  Most people believe that if you live your life in a righteous fashion, you will be rewarded.  Televangelists say this all the time, implying that giving them your money will result in you receiving rewards back N-fold (they never tell you that N is 0).

I have had people tell me that this is just part of God's plan.  Oh really?  Is it God's plan that I should suffer and that my wife and kids should suffer?  Is it God's plan that I must retain a job that provides health insurance or drain all my retirement funds in a few short years, condemning my wife to a life of poverty after I die?  Of course, I don't expect to lose my job but staying employed is always something to be concerned about in these difficult financial times.

I have had people tell me that God would not give me this disease if I were not strong enough to handle it.  That is just telling me that I need to tough it out.  That is telling me that, if I do feel weak, that it is just my own fault for feeling weak and I am letting God down by not bucking up.  If a person has suffered a tragedy, this is not something that you should tell them.  They need your support, not to be told that they need to buckle down and deal with it.

I am also a man of science and I understand how these things happen.  Every single day, 400 Trillion cells are replaced in your body.  Each cell has DNA that the cell has to copy and your DNA has approximately 3 billion base pairs that must be duplicated.  That means that, every day, you have about one trillion, trillion copies that need to be made exactly.

When a mistake is made in these copies, sometimes it occurs in a place that doesn't matter (or it may matter when combined with another mutation).  Sometimes it is significant enough that the cell cannot survive and that cell naturally dies off.  Every once in a while, the error is significant and the cell is viable but your bodies own anti-body system detects the error and kills it off.  Another option is that the error turns out to be useful and allows the species to improve and advance.  The final option is mine.  The cells are viable, undetectable to my body as bad cells, and, yet, disastrous.

Could God have prevented this error?  Yup.  Certainly.  But to do so, he would have needed to remove a significant portion of the beauty that is evolution and violate those rules he set in motion.  There are always things God could have done but he created this world with an amazing system of physics and biology and I don't believe he messes with this wonderful system he has put in motion.

Breaking the rules would make it impossible for the scientific method to work.  It would mean that it is impossible for us to discover the rules that govern the world in which we live.   I love rules (anyone who knows me, knows this to be true) and I believe that the God I believe in and the world I live in follow the same rules.

Bad things happen to good people and good things happen to bad people.  That is not God punishing us, that is just part of the random chance of life that sucks.  One person is 5 minutes late in the morning and misses a flight while another arrives 5 minutes early and gets on that flight as a standby passenger.  If the flight goes down, does that mean God loves the first person and is punishing the second person (and all of his family and loved ones)?

If you have suffered a tragedy, I HIGHLY recommend reading Kushner's book.  Don't believe that you are being punished.  Don't believe that you must be strong enough to handle this.  It is just fine to be weak and scream at God.  At some point you are going to need to accept your fate and rise up to it but don't let anyone make you feel bad for any pain you feel or need to express