U is for Upside

Everything that happens seems to have an upside and a down side, even when it comes to cancer.  I have written much about the downside of cancer, so I thought I would write about the upside to my particular disease.

First, I get out of a lot of work.  Admittedly, I have to make up hours (other than the 1100 hours I took off from 4/2012-1/2013, using short and long term disability) and frequently work long days to account for the time off, I still get to frequently leave work early and no one will question why.  About a month or so ago, I had my octreoscan and that involves getting an injection at about 10:00 and then returning for the scan at about 2:00.  I took advantage of this and went and saw a movie that I knew Stephanie did not want to see.  Middle of the day movie theaters are quite sparse and you really get your choice of seats.

Another advantage is the 'Cancer card'.  When I first started working out here in Colorado Springs, people joked about the kid card.  Gotta leave work early for soccer practice (kid card).  Had to stay home late to take the kids to the dentist (kid card).  Don't want to go to that work gathering?  Kid card!

Cancer cards work the same way but, unlike the kid card that often drew resentment, cancer cards draw sympathy!  Party is boring?  Cancer card, not feeling well tonight... Need an excuse to not go to that gathering?  Cancer card.  Got sat next to the really annoying person?  Cancer card!  Of course, now that I have talked about it, it will be a bit less effective... I really don't pull out the cancer card too often but it is wonderful having a ready made excuse for almost anything!  :-)

Travel.  I had never been to New Orleans before having cancer and it is one of those places that is fun to visit.  Stephanie and I have been there many times over the past few years and have gotten to explore much about that city and the area around it.   Of course, it does tend to take some of the magic out of the trip when you are there for treatment, or surgery, or to try and find out what can be done but it still is fun to have those trips together.

My cancer is one of very slow growing ones.  Fortunately, I do have doctors that consider it cancer (some fellow carcinoid sufferers have been told that they don't have 'real' cancer) and I have been able to have it treated relatively well.  The side affects of the medicines I have had to take are minimal to non-existent and the cancer has, up until this year, not really interfered with normal life.  I still have my hair, I have not had the extreme nausea that some experience from chemo, and I have had 12.5 years of living what most would consider a very normal life of skiing, cycling, and activities with the kids.

Cancer still sucks but there are upsides.  I don't know if I would be writing this if I had a pancreatic cancer or something extreme like that but I am lucky and there are silver linings that I can see.

T is for Terrified

Terrified comes courtesy of my wife as I could not think of what to do for T.  Terrified fits the bill and fits the sequence.

I normally don't get scared much about procedures, surgeries, the future or my situation.  That said, I get caught up in the occasional panic about any of the above.  I have fairly routine minor surgeries quite frequently now with the repeated stent swaps.  We seem to have minor surgery fairly well under control and the use of Propofol for these short procedures seems to avoid carcinoid crisis.  I know surgery is always risky but we have a handle on how to manage my complications.

I still get a bit anxious prior to these procedures at times.  Often times, it is when the nurses are putting in my IV that I start to panic some and I need my wife at my side to support me and reassure me.  The panic usually passes quickly but I get caught up in just not wanting to go through these procedures again.

Octreoscans are fairly routine as well.  I lay on a table for a one hour stretch for one scan and then another 40 minutes for the second scan.  Usually this is very relaxing and I often fall asleep during the scans and need to make sure I don't flinch too much when I wake up, distorting the scan.

Last year, I had a stretch where my shoulder started acting up again and laying on that hard table would make my shoulder hurt painfully and would make it hard to lay still.  Percocet can make the pain go away but, again, I need to rely on the company of my wife to get me through these stretches.

A few months ago, terror hit a new high note when my lung started causing problems.  I get scared about how long I have left with my family and begin to focus on all the things that I will miss.  This stretch of terror lasted for a few weeks which is highly unusual for me (usually, I get over it in a couple of days) and I think it is because the lungs were new territory for my cancer.  Again, Stephanie made things better and helped me come back down, comforting me when things really started getting crazy.

On a side note, we are kind of putting the lungs on the back burner for now and just monitoring them.  They are not likely to be the reason I eventually succumb to this disease but they are certainly going to interfere with my life.  We saw my oncologist this past Friday and he said that with moderate to severe anemia, stage 4 kidney disease, partially collapsed lung, pleural effusion on the right lung, and liver involvement, he cannot recommend any more extreme skiing.  I am still going to try to do all I can and I will be taking my time but I will be skiing double diamonds this year, just no more hike to terrain anymore.

I try not to let the terror overwhelm me but it sometimes does.  Others help bring my terror level down, particularly my beautiful wife.  The kids help although I try not to let them see me when I am at my most scared points.  River can be so kind and Riley and Forrest are great at just sitting with me or lightly rubbing my back.

Terror can help drive us to act but we cant let it take over our lives.  We need to use it to help us move forward and ensure that it does not hold us back.  Life is good and I need to keep that in mind.  It has now been over 13 years since my first critical symptoms of this disease started appearing and I need to enjoy all that I still have in front of me.

S is for Schedule

Prior to having cancer, something I would have never considered being an issue is scheduling appointments.  Cancer and the associated health failings I have experienced have really created some serious issues with scheduling all the various appointments and procedures.

When I first was diagnosed, I was placed on two separate treatments, Interferon-2alpha and Sandostatin LAR.  The interferon was given on a weekly schedule and I dropped by the hospital once a week at about 4:00 for my shot while Sandostatin-LAR came every 4 weeks and was given at the same time.  Scheduling wise, this was fairly simple as the visits showed up at the same time and my doctors appointments were overloaded with the sandostatin/interferon appointments.

This was quite easy to manage as everything happened on Thursday afternoons.  The only hard part was remembering whether or not I had an additional doctors appointment for that particular Thursday.  After the first two years, I began giving myself the Interferon injections to myself and I now only had to go to the doctors office every 4 weeks.

Stephanie and I found it quite funny when we saw a recent commercial for a new heart medication.  The commercial talked about how the new medication no longer required a monthly blood test.  Monthly?  Really?  Blood tests can be done almost anywhere and there are labs or clinics in most cities and small towns that can perform this service.  Once a month?  Wow, what I wouldn't give to be back on the once a months schedule again.

Things have gotten quite a bit more hairy lately with the degradation of my kidneys and a 'normal' set of appointment now include:

• Oncologist every 6 weeks
• Nephrologist every 4-6 weeks
• Aranisp injection every 2 weeks
• Sandostatin LAR injection every 3 weeks
• Hemoglobin and Hematocrit blood draw 3 days before every Aranisp injection
• Basic metabolic panel 5 days before Nephrologist appointment
• Urologist appointment every 8 weeks
• Ultrasound of AV graft with vascular surgeon appointment every 3 months

With my work out at Schriever, it is a minimum of 45 minutes (and often a full hour) to get to or from work for any of these appointments which means an appointment can take 2.5 hours out of the middle of a work day.  I try to make sure they are either late in the day or early in the morning but doctors and their staff are not always accommodating (11:30 appointments almost ruin the whole day).

On top of this, there are a continuum of other appointments and procedures.  In the last 3 months, I have additionally had

• a CT scan
• an Octroscan (takes 1.5 workdays)
• Ultrasound of the kidneys
• bilateral stent swap (2 work days)
• Complete metabolic panel blood draw
• Infusion of two units of whole blood (one work day)
• Carcinoid blood draw
• Redraw of a messed up H&H blood draw
• Appointments with an infectious disease doctor
• Blood draws to rule out blood infection
• 'Normal' dentist appointment
• Emergency dentist appointment for cracked tooth (replaced with crown)
• Several chest x-rays
• Lung tap to drain fluid

Next week and the following week, I will also have iron infusions.  It just drives me crazy trying to keep up with what appointment I am supposed to be going to today and how I am supposed to get my 40 hours of work in this week.  I have been doing 10 hour days followed by 4 hour days and days off to get all my hours in during each pay period, often coming up short and having to use PTO.  No one can say that I don't take advantage of all the health benefits available and the fact I won't die is, I am sure, an annoyance to the insurance company!

I have been extremely fortunate that my work schedule is fairly flexible and Metron has been flexible with my time as well.  I have just crested 80 hours of PTO and am relieved since that puts me past the point necessary to go on short term disability when/if I have my next surgery.  Of course, ski season is coming and I am going to want even more of that PTO for fun!

Both Stephanie and I keep my schedule both on her phone and on my work calendar.  With Riley in high school soccer, Forest in club soccer, and River in club swimming, we usually need to sit down on Sunday and discuss who is picking up whom and at what time and how this fits in with my doctor appointments.  Four drivers with three cars helps quite a bit but, even then, the kids are forced to look for rides with friends.

Yeah, I know it sounds like whining (and maybe it is) but does require quite a bit of planning to manage all of these appointments.  This is, somewhat, just what happens when you get old or ill but I am extremely thankful that I am still able to work in spite of all the appointments!

R is for React

Reacting is something I do every time I get new results that throw me a curveball and I often overreact.  I want to do something.  I want to be active in treatment and I want to do everything I can to address the new results.

The downside is that I often don't have a full picture when I get these results or run into this curveball and I start to speculate without full information.  The internet is fantastic for getting information but we often don't have sufficient knowledge to put that information in context.  This is partially due to my lack of medical training and partially due to the amount of information that is available.

Two recent examples of this are my failing kidneys and my collapsed lung.  With respect to the kidneys, I had myself on dialysis 6 months ago.  I was certain that they were ready to completely fail immediately and that I was going to need dialysis for managing that failure.  Here we are, almost 10 months later and I am still not on dialysis.  I am ready for the machine when that time comes and have a fairly good understanding of what it involves but, at least for now, my kidneys are in a stable state although frequent stent changes have been required.

My lungs are a similar story.  About a year ago, we first noticed something on my lungs and had come to a conclusion that it was probably a rounded atelectesis.  This seemed reasonable and we just continued to monitor.  About 6 months ago, a CT scan showed that the area was growing and that then meant that we almost certainly had some sort of cancer.  'Normal' lung cancer had no blood test or other method of verifying other than obtaining a sample and the area of the lungs gave a low probability of obtaining a sample.

A couple of months ago, part of my lung collapsed and the bloody pleura almost certainly indicated some sort of metastases.  The pulminologist did not suggest any solutions other than going home to wait to die and that news hit me very hard.   I passed this news on and then hit the net for information on what can be done.  Finding that surgery was an option, I was then certain that I was going to have surgery immediately but, here I am, months later, still without any direct plan on what we will be doing.

What I do know is that an octroscan shows activity in the area of my right lung.  Of course, the way an octroscan is done, it is difficult to determine if the reaction is in the lung or the pleura of the lung.  Given the CT results, I am fairly certain we know that it is in the lungs.  Next week, the New Orleans group will be discussing my results and we will find out what we do at that point.  Surgery is still on the table at some point because we need to either address the cancer or the continued return of lung compressing fluid.

Reaction is natural but it is something that I need to contain those feelings.  Obviously, one can go too far with lack of reaction and not respond enough.  Somehow, Stephanie and I need to strike a balance between over-reacting and ignoring the results.  If I had to pick a side on which to err, it will always be over-reacting because at least then I feel as if I am doing something.

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.