Q is for Quack

When you have cancer, it is guaranteed that you will have many people offering up advice on home remedies, specialized diets, or miracle cures that will cure your cancer.  Most of these people are well meaning and I always accept their advice with a smile and an appreciative thank you but people do need to realize that many of the cures are also scams.

Cancer patients are just another group of people that can be caught up in scams because they have a desire to know they tried everything.  I know there are cures out there that have not been found by science and some of these are just 'normal' herbal cures but the likelihood of finding these is becoming smaller and smaller.

Here is a great link to 10 myths about cancer and I have been told about two thirds of these myths over the past 13 years.  I didn't get cancer because I ate too much sugar nor did I get cancer because I did not eat enough acidic foods.  I got cancer because my neuroendocrine cells mutated in just the right fashion to allow uncontrolled growth along with not enough mutation to be detected by my immune system.  It was chance and I just drew the short straw.

Science now knows that cancer is not a single disease like polio or even aids.  Cancer is a general term that simply describes some sort of uncontrolled growth inside your body.  Breast cancer is as similar to carcinoid cancer, pancreatic cancer, or lung cancer as the common cold is to the flu.  Cures for one almost never lead to cures for the other.  In fact, not even all breast cancers are the same.  There are cures that work well or certain variations and are completely useless for other variations.

My own carcinoid cancer is different from other carcinoid cancers.  My tumors don't respond to Temodar and Xeloda but other people get a dramatic (although somewhat short term) response to those drugs.  Some carcinoids grow exceptionally slowly, others grow extremely rapidly.  Some folks with carcinoid experience severe and frequent flushing while others enjoy spectacular diarrhea.

There is not ever going to be a general cure for cancer and anyone who tells you so is trying to scam you.  There are going to be cures for some specific cancers and there even may be some cures that address many cancers but nothing is going to cure all of them.

This does not mean research is in vain.  There have been some amazing instances of complete cures lately using programed aids viruses and there have been great advances in simply extending life and reducing pain and suffering.  People are living longer and many cancers are indeed completely cured and I continue to contribute to research for research into cancer cures.

Will my cancer be cured?  Maybe, but not in time to help me.  50 years from now?  Perhaps they will have new techniques that will be able to eradicate the disease in many carcinoids.  I believe the techniques using programmed aids viruses really have potential and, with enough time, it will cure many more cancers than we can cure today.  I have been fortunate to have a slow progressing cancer and just hope to live long enough to see some of these new techniques succeed more than they fail.

P is for Perception

Perception.  What is a cancer patient supposed to look like?  How do others perceive me?  How do I perceive myself?  These questions affect me all the time.

I see others in the infusion room that are my standard perception of what a cancer patient is supposed to look like.  I see people with ravaged bodies, devoid of any body hair.  I see people covered in blankets while the poison drips into their blood.  I people comforting and trying to help their loved ones through this horrible time.  I don't see myself in that place.  I feel odd, bopping into this room, relatively upbeat, walking with no problems and receiving my shot with no side affects.  I feel out of place in this room, as if I don't belong and that these are the real cancer patients and I am just a poser.

I worry about how others perceive me.  I know it probably seems conceited for a 47 year old man to worry about how others look at him but I have a problem with my (almost certainly incorrect) perception of how others  perceive me.  I feel people expect me to be strong and to bear up under the pressures of the disease.  I worry that others question the legitimacy of my disease because I, at first glance, look to be be quite normal and healthy.  I want others to know that I still suffer and my disease is not just sunshine and rainbows but, at the same time, I hate the idea that others know that I suffer.

I am stressed by the changes that the cancer has wrought on my body.  I have lost 30 pounds and dropped two inches off of my waist and feel like I have lost what little muscle mass I once had.  I am nervous in the locker room before a hockey game that others who don't know will see my colostomy bag and behave exactly like guys with no manners often behave.  I am nervous about the possibilities of more bags and tubes as my disease advances and yet more locker room issues.  I hate the look of the AV graft in my arm and the bizarre shape that it makes under my skin and don't want others to see it.

I perceive myself in different ways at different times.  I perceive myself as a weakling when I need to have my wife drag my goalie gear bag to the car after an exceptionally tough game.  I perceive myself as a strong person when I struggle to walk fifty feet in the ICU after 3 days of surgery.  I perceive myself as disfigured when I see the body modifications that have changed my body from what seemed 'normal' to somewhat bizarre or freakish.

I perceive myself as an example to others when I continue to play hockey, attempt to ride my bike, and put in a 40 hour work week.  I perceive myself as a success when I make it through yet another surgery or tolerate another treatment.  I perceive myself as a failure when I need to pull the door shut at work because my emotions are getting the best of me.

Perceptions are almost certainly wrong.  I know people usually don't see me or the things that I am worried about and I am a classic example of the spotlight effect.  I know I need to be less concerned about perceptions and just move forward, being who I am but it is hard.

We all want others to think the best of us and sometimes the perceptions can get overwhelming.  I will try to continue to stand tall and do my best to ignore the negative perceptions I have of myself and that I imagine others have of me.  I am who I am.  I am strong when I can and I have others to help me when I am weak.  I need to learn to accept both as part of me and who I am.

O is for Oncologist

Coming up on 13 years in and I have had many oncologists over my treatment.  I started out with Dr. Reznick for the first two years here in Colorado Springs and then switched to Dr. Young as Dr. Reznick moved to another practice.  Dr. Young did a wonderful job over the next years, guiding treatment and taking advice from other experts around the country and worked in partnership with them and me in my treatment.

There is where I wanted to take this post.  All medicine should never be a one way street between you and the doctor.  You should never go to the doctor and accept everything he says as the gospel handed down from on high.  Doctors know so much but they are indeed limited in their knowledge.

Medicine should be a partnership between you and those treating you.  You need to take what the doctor has told you and use that information as the start of your treatment.  The doctor will miss things and you need to participate in your treatment so that you are fully aware of what is being done for you and with you.

I have several cases of mistakes over my 13 years of treatment.  Prior to my first diagnosis, the physician's assistant (PA) got hung up on irritable bowel disease and did not pay attention to some of the symptoms such as early evacuation of meals and loss of weight.  My first oncologist stated that he felt I was cured of this disease after 1.5 years of treatment when all the literature states that metastatic carcinoid cancer is not curable.

I have had other PA's not pay attention to the type of bacteria for an infection and prescribe a ineffective antibiotic and I have had doctors prescribe medicines that were counter indicated for some of my other problems.  We have so much information at our fingertips that we can now search and make ourselves knowledgeable prior, during, and after treatment.

The downside to this information is that it can scare us, causing misleading information to confuse and mislead us and I do this all the time.  The recent partial collapse of my right lung and the bloody pleural eflusion caused me to go into a panic and visions of an early death.  Is this something to worry about?  Certainly but I need to relax and combine the information that my doctors give me along with the information that I am able to glean from the literature.

Your doctor is your expert.  He should be the one that sets you on a path.  You need to ensure that the path is something you understand, something you agree with, and something you support.  When you bring your car in for repairs, the mechanic there is the expert and you work with him to determine what is the proper treatment.  You body is no different other than being a bit more precious.

Listen, learn, understand, and live.

N is for Nurse

Doctors often get all the glory but the nurses are where treatment really is experienced.  Doctors generally do a good job of diagnosing, prescribing treatment, and managing drugs but it is the nurses that deliver all of these things to you.  They do it day in and day out, seeing you at your best and at your worst in the hospital, recovery rooms, and at the doctor's offices.

After surgeries in New Orleans, all patients wake up in the intensive care unit.  The ICU never has more than two patients per nurse and often, just one nurse for each patient.  I imagine that this is often the case for most hospitals but the care that I have received from these nurses has always been phenomenal.  I remember one night in the ICU where I had swallowed a rather large pill while still having an NG tube in my stomach.

The nurse turned off the suction while I took the medicine but I was absolutely convinced that the pills were still stuck in my throat.  I know that it as almost certainly the NG tube that was causing those feelings but the combination of ICU insanity and medication made me a bit unstable.  The nurse sat with me for several hours as I struggled with a complete lack of sleep and a certainty that I was going to choke.

They have gone to great lengths to try and make sure I am as comfortable as possible in the ICU where comfort is almost the opposite of what you experience here.  The ICU is full of beeping lights, blood pressure cuffs every 15 minutes, checkups every 2 hours and general noise of continual activity.  One stay in the ICU had a door outside my room that (in my perspective) kept slamming.  The charge nurse put a sign on that door, telling everyone to not let the door fall shut but close it gently instead and it helped quite a bit with what little sleep I was able to get.

After being released from the ICU, I go up to a regular room for another couple of days and there are nurses there that have taken wonderful care of me.  They are always ensuring that I have sufficient ice water to drink, I have juice when I am not NPO, and they find medicine to help me sleep and survive the final stretch in the hospital.

The same kindness is seen in nurses throughout my treatment over the years.  Nurses at the oncologists' office know me by sight and ask about the family and other things going on in my life.  They are on top of my my treatment and always greet me with a smile.  Remember your nurses and thank them.

M is for Mole and Memories

Two words this week and I hope I will be able to bring them together for you.

Mole.  I have one on the back of my neck and it has been there for as long as I can remember.  Occasionally, whomever is cutting my hair will catch it when cleaning up the back of my neck with a shaver but, most of the time, I have never thought much about it.

About 10 years ago or so, I remember one of my children pointing at it and asking what it was.  Without a second thought, I told them 'It is my button'.  Naturally they asked me what it did and I did not know what to say so I told them to push it and find out.  Of course, that is exactly what they did and I had to make a decision as to what the button did.

Well, the only thing that came to mind at the time was to make a noise so I just made some random (and loud) sound which surprised everyone, myself included.  Of course, as soon as their shock and laughter died down slightly, my button was pushed again and I made another, different, and louder sound.  Of course, now all the kids needed to get in on the action and I had yet another problem of continual pushing of the button and the associated noise.

Being quick thinking for one of the first times in my life, I let them know that the button only worked twice per child, every day or hour (memory fails me as to what the actual time limit was).  The button worked anywhere, be it at the dinner table, while fishing, sitting at church, or just relaxing on the couch.  I had to come up with different sounds, sometimes, looking like it was going to be quite loud and then just emitting a quiet beep or cough.  Other times, I would bray like a donkey at the dinner table, much to the dismay of my wife.

My kids don't push the button much anymore but Forrest still thinks of it every once in a while and pushes it just to hear what odd sound comes out of my mouth.  But they still remember the button.  They remember that as something special that they had with dad and with no one else.  My hope is that, 10 or 20 years from now, when they have their kids, they will find their 'button'.  It may not be something like the mole on the back of my neck or a mark on their leg but it will be something special just between them and their kids.

All those years from now, I hope that they remember dad and his button.  I hope that they create these special connections with their kids.  Money is always nice and makes living easier but nothing lasts and makes a mark like a memory.  They may not remember this exact memory but they will remember other things that we have done and experienced together.

Perhaps it will be that school day we played hooky together and spent the day in the powder or it may be the day we spent fishing together.  Perhaps it may even be a shared appreciation for horrible puns or math.  I don't know what it will but I want them to have a broad range of choices as to what stands out and what they look back on with fond appreciation.