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.

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

Famous Carcinoids

Famous people who recently died of neuro-endocrine tumors:

Dave Thomas (Wendy's)
Derrick Bell (Law Professor and Rights Advocate)
Steve Jobs (Do I really need to say anything)
Audry Hepburn (Actress, appendiceal cancer that was likely carcinoid)
Stuart Scott (ESPN anchor, Appendiceal cancer that was likely carcinoid)

General carcinoid frequencies:

1 out of 300 appendectomies
1 out of 200 in necropsy (incidental)
1 in 40,000 in general population

The Waiting Game

After the shoulder surgery scare, I have had two more consultations on my cancer (both planned before the shoulder surgery).  I met with Dr. Charles Nutting in Denver about the Sir-Spheres treatment.  Dr. Nutting has been doing this treatment for about 7 years and currently does about 100 treatments per year.

Sir-Spheres is officially approved for metestatic colo-rectal cancer which is not what I have but the treatment is frequently applied to carcinoid cancer and insurance has not normally been an issue.  Your liver receives about 90% of it's blood supply from the portal vein that flows from the intestine while the tumors receive about 90% of their blood supply from the hepatic artery.  Sir-Spheres are injected through the hepatic artery and then get lodged in the tissue fed by this artery which just so happens to be the tumors we want to kill!

Sir-Spheres contain Ytttrium-90 which has a half life of about 2.5 days.  This means that, within about a week, the radiation has reduced by a factor of 8.  Dr. Nutting says that the amount of radiation emitting from the body of someone treated with Sir-Spheres is similar to that of a high altitude flight (so, not too much).  That said, it is recommended that you keep your distance from young children, pregnant women, and sleep in a bed by yourself for about 3 days.

The primary side-affect experienced from the treatment is flu like symptoms (fever, nausea, and fatigue) that show up a few days after the treatment.  Normally Dr. Nutting performs an initial injection of a tracer to identify your personal physiology a couple of days before the actual procedure as everyone's actual artery makeup varies.  There is also the possibility that treatment is not an option if your plumbing does not direct the majority of the radiation into the liver (the lungs are the next stop after the liver) but that is an uncommon situation.

My second consultation was with Dr. O'Dorisio at the University of Iowa to get his opinion on when we should begin treatment.  His radiologist looked at my scans and concurred that my liver burden was increasing but his opinion was that I only had about 10-15% of my liver consumed by the tumors.  This means it is probably a bit early to treat as Dr. O'Dorisio generally waits until 30% or more of the liver is consumed.

I can hear you asking already, what do you mean, too early???  Well, there are only a limited number of times that you can receive Sir-Spheres before it is either no longer effective or you have received too much radiation to be safe.  Because of this, you don't want to waste any of your ammunition by attacking when it is too early.  This treatment only prolongs life and will not eradicate the cancer so waiting a longer amount of time increases the total amount of life I will receive from all the treatments.

So what then do we do now?  First we are going to get the symptoms of my cancer under control for now and then we will delay treatment until the liver becomes more consumed.  In January, I make my annual trip out to Iowa to meet with Dr. O'Dorisio and we will get a Doppler ultrasound to reassess the tumor burden at that point.  I don't expect to have hit the magic 30% point by that appointment but do hope to have my diarrhea and flushing under control.

So, when do we treat?  About 9 months ago, a Doppler ultrasound put my tumor burden at less than 10%.  I have a personal guess that I will be at or at least close to the magic 30% point in about a year. 

The great thing about my cancer is I get the option of waiting which is not an option for so many other cancers.  Of course, the bad thing about my cancer is the continual image of the sword of Damocles, suspended over my head, hanging by a single hair and threatening to fall at any time.   I will enjoy my time.  Everyone is dying from something.  I just happen to have the fortune of seeing one of the threats bearing down on me!

So much for a successful shoulder surgery

I had wanted to blog about something other than cancer after winning the all tournament goalie award at the Las Vegas tournament but it was not to be.  I have had numerous surgeries over the years and have not ever had any complications.  Well, that streak came to an end on Monday when I had a severe case of carcinoid crisis in the middle of my shoulder surgery.

It should have been a routine surgery with me in and out of the operating room in less than an hour.  Surgery started out just fine and the orthopedic surgeon was able to scope my shoulder and determine that there was no rotator cuff tear and no arthritis.  He was just then going to begin to treat the bursitis when one of the nurses asked if I was supposed to be red.

One of the things carcinoid tumors forces upon those of us with advanced liver tumors is carcinoid syndrome.  This manifests itself in many different ways from frequent diareah to flushing (redness of the skin) to a rapid drop in blood pressure.  Numerous things can cause the onset of syndrome including stress, alcohol, and exertion.  I have never had significant syndrome up to this point and thus it was not much of a concern.

Flushing and a huge drop in blood pressure is exactly what happened to me at this point.  My skin turned beet red, my heart rate shot to 130 and my blood pressure hit the floor.  At this point, they laid me back down, closed up the incision, and attempted many things to try and restore my blood pressure including chest compressions.

Finally, my body returned to normal and they took me out of the OR.  Naturally, this was very scary for the surgeon, anesthesiologist, and all in the operating room.  I, of course, had no idea what was going on and I feel incredibly sorry for my wife who had to endure this all alone at the hospital.

So, where do we go from here?  My shoulder still needs work but we will probably be putting that off indefinitely.  Next week, I go see Dr. Nutting in Denver and will be talking to him about treating the liver tumors with the radioactive SirSpheres.  Liver tumor burden is what generally causes carcinoid syndrome and carcinoid crisis.  The reason is that the tumors are able to inject histamine and other endocrines directly into the blood stream without any filtration.

Another day at home and I hope to return to work on Thursday. 

Hockey tournament time

It is the end of September and that means Las Vegas hockey tournament time!  For about 8 years now, a bunch of friends and I have made a yearly trip to Las Vegas, often to get our butts kicked in an adult hockey tournament but we have won it once.  I even got the all tournament goalie for our division and I display the trophy proudly in my cube at work.

The team has many of the usual suspects that many of you already know.  Brian Einsweiler, Robert Robinson, Erin Genz, Rob DeLine, and Rich Vitamvas.  There are a few people joining us for the first time this year and we hope that our team is able to get a win with them here.

Part of having cancer is learning to live and appreciate life with and in spite of the disease.  There are some out there that feel that cancer patients need to look sickly, need to sit at home, or need to quietly accept their fate.  I have to admit that I get a bit of satisfaction when some people are shocked to find out that I have cancer since I don't fit the mold that many have of those with these diseases (37 ski days in the 2010-2011 season).

In fact, I am having surgery on Monday 10/3 to fix the arthritis and bursitis in my shoulder (go ahead, make the old guy jokes if you want).  Some would say that I should not bother with repairing my body since the cancer could take me or that it is a waste of good money/resources.  I have to admit that I, too, get caught up in those thoughts as well at times.

10 years ago, we built the house that we currently live in and I had the thoughts in the back of my mind about whether I was going to be here long enough to pay off the loan.  8 years ago, we bought me a new car and I questioned how long of loan I should get 'just in case'.

I try my best not to live that way.  I try to live my life, assuming the best possible outcome.  This means that I continue to floss my teeth because I will be needing those teeth when I really get old.  I continue to put money in a 401k because I am going to need that money when I finally get to retire.  Cancer does not mean lay down and die.  If anything, it means you need to wake up and really start appreciating the life that you have, treasuring every moment, planning for the win.

How quick are you going to get up?

Some of you may remember a Nike video from early 2010 called The Human Chain  featuring Lance Armstrong as well as both amateur and professional athletes from martial arts to bull riding to gymnastics.  This video and the music around it is one of the most inspiring sequences I have seen for everyone, not just cancer survivors.

The song is by the Hours who go through a number of examples in history of folks who were hit with difficulties or tragedies and found the strength to grit their way through those situations.  In the song, they talk of Ludwig Van Beethoven and how he went deaf and didn't give a damn.  I am sure he did give a damn and he was pissed off at the inability to hear the music he was creating and had created but he did not let that stop him.

What has knocked you down lately?  Is it a long lasting relationship that has ended?  Have you been hit by disease like I have been?  How about loss of job, being passed over for a promotion, or financial difficulty?  Everyone has been knocked down and no one is going to remember you getting knocked down.  The only thing that matters is how you are going to respond to that tragedy.  Even the bible talks of Job getting hit again and again and again by successively more difficult stressors.  The point of the story is not the difficulties but the way he stood fast.

I got knocked down 10 years ago with my first diagnosis, knocked down again with my second surgery in 2003, again in 2008 with my third surgery, and just recently with the resurgence of the tumors.  I intend to continue to get back up again and keep fighting this disease, knowing I can keep knocking it back down.  As long as I am alive, I will continue to fight this disease.  Perhaps it will eventually win but it will not win without a fight.