Archive for October, 2009

Well, it IS called the Practice of Medicine….

Posted on October 25, 2009. Filed under: The 'C' Word |

My Dad (God love him, and rest his soul), a well-known curmudgeon, skeptic, and Doctor-hater had a saying: “The profession is called the practice of Medicine, and they are practicing on YOU!”. Well, in reality, this is right.  Nothing about the Medical profession is perfect, but it’s better than what we would have had a scant 400 years ago when the typical treatments were to use lancets to open a vein and ‘let blood’ or any other number of barbaric treatments for what might ail you.  And, yes – as little as 100 years ago the Barber, the Dentist and the Doctor were usually the same person.  Your best hope was that he remembered why he was seeing you, and if he was cutting, pulling, or whatever – it was what you actually came to see him for.  Seemingly a diverse set of talents there.  I can’t really imagine going to my Dentist today and saying, “Um, have a little bit of a toothache in the right upper molar, and oh… Can I get the hair just a bit shorter this time? And, how about a steam and a shave?”

Anyone that has been following my Facebook along with my wife, Sue’s, knows that the tumor just isn’t cooperating.  Or, if you want to look at it another way – it’s cooperating just fine.  Visually, anyone could concede that I’ve got cancer.  It’s not pretty, and it does some very nasty things, all in all.  But, I’ve submitted to a total of three biopsies – all of which keep coming back as “high grade dysplasia”, which essentially means “It’s not cancer – yet…”  I’m fairly sure that the Insurance Co. isn’t going to want to pay for any more biopsies – as least one’s that aren’t mandated with the removal of the mass.

Being unlike my Dad, I generally like Doctors. I’ve met some real clods in my day – complete lack of a bedside manner, no empathy whatsoever or sympathy for the situation – just a cold, clinical attitude to whatever you’re going through.  I get the need to emotionally detach, but there are limits to that as well.  Fortunately, none of the Doctors that I’ve seen are in that category (but then – I didn’t have much of a discussion with the first Doctor who did the initial colonoscopy….  Sue says he pretty much fit into that ‘clod’ category.  Me, I was simply enjoying the Fentanyl and I don’t remember much. Possibly that’s why I like Doctors…  For the drugs?  🙂 )

So, I’ve had pretty meaningful discussions with my oncologist, my radiation oncologist, and my surgeon over the past couple of days.  The bottom line – three biopsy attempts do not show any cancer activity.  Only ‘suspicion’ of cancer.  Suspicion is not a good reason to submit someone to extremely aggressive therapy such as chemo and radiation. So, the oncologist says seriously consider having the tumor removed and we’ll biopsy it after the fact.  The radiation oncologist says pretty much the same thing.  The surgeon – right in line….. We can either do more biopsies (of which the insurance company at some point is going to wonder if we’re just waiting for it to BECOME cancer….) or we can go in, remove the tumor, put me back together as well as possible, and then determine what the steps are post-surgery.

There is still the real possibility that there is cancer.  Best scenario is that the cancer is localized to the tumor itself. Second best – the cancer has left the main tumor and involved the bowel wall. Third scenario – and what we’ve been thinking it is all along – it has left the main tumor, involved the bowel wall and a couple small lymph nodes.

I’ve already made the decision to go ahead with the surgery.  It’s time to move forward and get something done.  I should have a conversation with the surgeon’s scheduler tomorrow (Monday, 10/26) and would expect to have surgery to remove the tumor and a section of the bowel within two weeks or so.

One thing is for sure: Once the tumor is removed and the biopsy on the tissue is done – we will know with 100% certainty if we are dealing with any form of cancer. With it out, it doesn’t really have any place left to hide.  And, if the pathologist’s do find something – then it can be dealt with post-operatively.

In the end (no pun intended) there may be no “glowing”, short of the PET scan which apparently associated me rather closely with a lightning bug – given that both myself and a lightning bug have a butt that glows.  OK, now that I’ve ruined your love for lightning bugs by comparing them with my glowing tumor in a PET scan, I’ll leave for now.

Rick

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Odd situation right now. I WISH I had cancer…..

Posted on October 19, 2009. Filed under: The 'C' Word |

This is just frustrating to some degree.  The two Doctors that did the colonoscopies, the Oncologist, the Radiation Oncologist, and the Surgeon – all are 100% certain that the tumor is cancerous.  When something acts like cancer, reacts like cancer to the tests that have been done so far, it should be pretty easy to conclude that it’s cancer.

I wish someone would tell the biopsies and the pathologist.  Two biopsies, re-read by different pathologists, and the same diagnosis comes back: “High grade dysplasia with properties suspicious of cancer” or something really close to that.

Why is this so frustrating and so critical?  Well, oddly enough, no one will treat you for cancer until you are actually 100% beyond all shadow of doubt deemed to have cancer.  And, apparently, a doctor with years of experience is trumped by a biopsy of a tumor that just does not want to be properly diagnosed for what it is.

So, I’m currently in limbo and have another appointment with my Doctor to go back for another rectal exam and biopsy. What’s kind of scary (to me, at least) is how big of a piece of this thing is the Doctor going to want this time?  I think that all of the actors involved here pretty much know that we need to get a solid diagnosis and get the treatment started. I guess if the drugs are good enough, he can take as big a piece as he wants. :o)

One thing for sure – the tumor isn’t going to get better on its own…..

Rick

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Taking Me Apart and Putting it All Back Together Again….

Posted on October 17, 2009. Filed under: The 'C' Word |

Make no mistake – the practice of Medicine has always been a fascination for me.  It’s detective work in the most critical sense, and I love the puzzle.  Aside for the cynical attitude (which mimics me so well that he could be my brother), it’s likely one of the reasons that I like the Fox TV Show “House” so much.  Far fetched?  Sure – but an hour of ‘suspension of belief’ is OK.

So, why this bit of information? Your General Practitioner may not strike you as the most brilliant Doctor ever.  They deal with cold symptoms, this hurts when I do this (“Uh, don’t do that…”), flu, and a whole host of other things that are just – mundane. But, I owe my GP a debt of gratitude, and very likely my life.  He knew enough from my symptoms to order up a colonoscopy.  Thank goodness he did.

So, to date I have met two Gastro-Intestinal doctors, an Oncologist, a Radiation Oncologist, a Research Coordinating Nurse, and a Colo-Rectal Surgeon. My surgeon is a fascinating guy with a massive amount of credentials behind him.  Creighton, College of Surgeons – Edinburg, Scotland, multiple memberships in various medical associations.  Plus, he has a very good bedside manner (and, that’s not as easy to come by these days as it once was). More importantly, he had time to listen, talk about what is going on and what the potential outcomes would be.  Plus, he’s from Hyderabad, my favorite city in India (of course, Microsoft has a really big campus there….).

What we discussed specifically was the current state of the tumor (partially obstructing in the lower bowel in the rectum) and the fact that if all goes well with the radiation therapy and the chemotherapy, the odds are better than not that he will be able to remove the tumor and re-attach the ends of the colon to return me to near perfect – minus some inches of lower bowel.  Of course, they do call it the “Practice of Medicine” for a reason.  No one has perfected medicine.  Nothing is a guarantee.  What I know in addition to the above is that the possibility is that he won’t be able to put me back together.  And, that means that I’ll have to have a colostomy – not the worst outcome ever.  But, regardless – I’ll have a colostomy for a couple months anyway, as the resected bowel heals.

What does all of this mean?  It means that I have met everyone that is going to be directly involved in my cure.  Now, all I want to do is to get going.  Bring on the radiation, bring on the chemo.  Bring on the surgery.  I want this little, 5cm parasitic thing out of my ass.  Tomorrow would be OK.  🙂

Rick

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I Expect to Glow in the Dark Soon……

Posted on October 13, 2009. Filed under: The 'C' Word |

This morning I went back over to the hospital for a PET scan.  PET stands for Positron Emission Tomography, which basically means that they create a 3-D map of your body.  But, before they toss you into the ‘field of nuclear bombardment’, they give you an infusion of radioactive tracer material.  In my case, I’m pretty sure that it was flourine-18.  It’s mixed with a glucose (sugar) solution and injected into the body via a vein.  The end result is once you’ve sat for about an hour, giving time for the radioisotope and the glucose to move through your body, the glucose is eaten up by the more voracious eaters in your body.  In my case, that’s the cancer – which lights up like a beacon in the PET scan.

The good news is that there is only one area that was indentified by the PET scan as having any kind of activity – and that was the known tumor in my rectum.  Yeah, it’s good news when they only find cancer where you already know you have it!  Certainly, the bad news would have been that there was another area of interest. There wasn’t, and that’s a good thing.

The PET scan results are being used to map out what the best approach to delivering radiation to the tumor. The Dr, his radiation mapping experts and the physicists (right – physicists…. They help to determine how strong of a dose to be given to achieve the desired results) work to determine the best course of therapy.

Me, I’m just looking forward to moving ahead.  I have a meeting with a surgeon this Thursday, and hopefully soon I’ll know what leg of the research project I fall on. I have a 50% chance on needing a port installed in my chest – but, one way or the other, it’s all good.

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The cure now begins….

Posted on October 7, 2009. Filed under: The 'C' Word |

I met with the oncologist, Dr. Silverberg yesterday.  Very, very enlightening meeting, and very positive.  (It’s all about the positive aspects of the fight, yes?)  Dr. Silverberg is a bit quirky.  Great guy, don’t get me wrong – but the more doctors I get to know, the more I realize that the more intelligent you are, the more quirky you are.  He has a tendency to answer his own questions, and says things out loud that you don’t expect in a conversation. For example, he’s talking and just stops – pauses for a minute – and says, “Wow.  I’ve been talking a lot.  I need to get some water”.  Umm, yeah – ok.

Which, in the end means that he’s human – and that’s a good thing.  I don’t much like the sterile, precise and rather distant attitude of some doctors (and professionals in my own field).  I like quirky – it’s fine.  For those of you that know me well, I’m just a tiny bit quirky as well.  🙂

He described my cancer as an early Stage III, and this is because (again, as I understand it) of the early involvement of a few lymph nodes.  But, the radiation (I see the radiation doctor on Friday) and the chemo will clear that up, as well as stop the growth and reduce the size of the tumor.

What is exciting is that my type of cancer (location, involvement, etc.- and if cancer could EVER be termed ‘exciting!’) is applicable to a current research study that is being done. What is exciting about it is that there is new drug therapies that are developed and in late stages of testing that are being finalized for use in colon cancer.  These drugs have been used very successfully in breast cancer, and the research is to study the applicable uses for colo-rectal cancer. I’ll be on the cutting edge of treatment for this type of cancer.  I am going to participate in the trials and the research for a couple of reasons:

1. People before me participated in research trials that are driving the treatment that I will receive.  I owe it to those of us that will be afflicted in the future by my experiences and the findings of this research.

2. There is no placebo (or, simply “no sugar pill”) involved in this research.  The least treatment that I will get is what is the norm today – radiation therapy and 24/7 infusions of FU-5 (fluorouracil or 5-fluorouracil – the most common type of chemo drug). 

3. I could (by complete randomization of research candidates) get one of three other approaches:

  • FU-5 and another IV-administered drug called Oxaliplatin and radiation therapy
  • Oral (by pill) chemo drug called Capecitabine (Xeloda) and radiation therapy
  • Oral Capectibane and the IV of Oxaliplatin and radiation therapy

However, the best news was received this morning from Dr. Silverberg’s office.  I was sent over to the radiology lab to have blood drawn and for a complete CAT scan, including the wonderful barium ‘milkshake’ (I’ll be pooping chalk for a week…) for an upper gastro-intestinal study and an iodine solution delivered via IV.  Both of these provide a very clear picture of the chest, abdomen and pelvis by providing a high contrast for the CAT scan to pick up any other abnormalities. (oh, and for those of you that might have to have a high contrast vein study with an iodine infusion, when the iodine hits your pelvic area, it ‘feels’ as though you’ve just peed your pants.  (You haven’t it’s normal, and you’re just fine….)

There are no other sites located – which means that the cancer is very contained and has not metastasized (invaded other organs, bones, etc.).

So, this is a really, really good day.  I’m excited about getting started on the treatment and getting cured.  There are a lot of hurdles yet to go, and there are going to be some down days in the near future.  So, I have (initially – there may be more….) 6 weeks of radiation and concurrently 6 weeks of chemo (on one of the ‘legs’ of the trial that I noted above.  After that, we wait a few weeks so that the treated areas can stabilize after the bombardment from the radiation.  Then, it’s off to the surgeon to get this little parasitic bastard removed from my bum.  Or, more appropriately, about 4 cm inside my bum.  that should take place right around the very end of December, or beginning of January.  (mark your calendars….)

If you have ever seen the movie ‘Alien’ (still on my top 3 list of scariest movies EVAR), you’ll recall that Kane (John Hurt) is ‘attacked’ by one of the egg ‘creatures’ (termed ‘face huggers’) and has an embryo planted in his chest. During dinner, this embryo – now more matured – bursts from his chest (of course, killing him) and skitters off to terrorize the rest of the ship as it grows quite rapidly into the eight foot tall alien that the rest of the crew tries, in vain, to fight off and kill.

Think of that alien embryo as my tumor.  No one – including me – wants to see that pop out of where it would pop out of.  And, certainly – not during dinner.

🙂

Rick

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Hi, my name is Rick (“Hi, Rick….”) and I have cancer….

Posted on October 4, 2009. Filed under: Uncategorized |

OK – the elephant in the room now has a name, and everyone knows what it is.  If this comes off sounding like a rant, I’ll apologize in advance.  My only real intent with this post is to hopefully put more of you at ease with the fact that I have cancer, and that – God willing – everything is going to be OK.

But, I have a confession to make. I’m human, just like everyone else. My daughter-in-law’s uncle passed away from cancer not that long ago, and now her other uncle is fighting it. In fact, my own father passed away from cancer. The confession? I didn’t really know how to deal with any of these three cases – relating to each of them exactly they way that I did the day BEFORE I found out that they were sick.  It’s odd, that we as humans, find it difficult to know how to act or what to say when someone we have known, laughed with, partied with, is all of a sudden….  Different.  It’s hard to find the words to express your feelings – because you typically don’t have a context in which to talk to the person.  You, yourself feel mortal, and uneasy. What if I say the wrong thing? What if he doesn’t want to talk about it? What if he doesn’t want to talk at all?

That’s my mission today.  I want to put you at ease. I want you to be able to talk to me and know that I’m interested – just as if I was never diagnosed with cancer.

Rule #1: I know you care.  Thank you.  Say it, or give me a hug, offer encouraging words, whatever you are comfortable with.

Rule #2: I have cancer – not leprosy, smallpox, H1N1.  I’m not contagious. I might have athletes foot, so please don’t play with my feet.

Rule #3: I love to talk about computers, Xbox, video gaming, science, technology, cars, and racing.  Formula 1 and Drag Racing preferred, but I can get my arm twisted into talking about NASCAR.

Rule #4: I still eat lunch, dinner, and have a beer or glass of wine now and again.  If you would want to invite me out to talk (I’ll pay my own tab, please!) about whatever – call me, drop an email…. etc.

Rule #5: During my treatment, I might lose my hair.  I’m OK with it, and so should you.  There are lots of cool looking bald guys out there.  I won’t be a cool looking bald guy.  Just bald, with the familiar ‘chemo peach fuzz’.  No worries – I’ll pretty much wear a hat or one of the really cool Marcus Fenix skull caps from one of my favorite games, Gears of War.

Rule #6: I’m still Rick.  Nothing has changed, except I’m going to be going through some radical treatments in the coming months, and (hopefully) one surgery. I’ll have good days and bad days.  If I get cranky (most of you that know me might not be able to tell the difference anyway…), it’s just because I’m not feeling great today.  I’ll be better.  And, as time goes on, I’ll be MUCH better.

Rule #7: If you really, really want to get comfortable talking to other people that have cancer and are fighting it, I’m likely to be your best possible opportunity to get more comfortable with everyone else that you know that has cancer. As mentioned above – I don’t mind talking about it.  I’m a relatively easy guy to get comfortable with, I don’t bite, and as mentioned – I’m not contagious.

The net of all of this is simply – please don’t ignore me, feel uneasy, or otherwise think I don’t want to talk.  I do…  If you are at all apprehensive, know that I make this promise to everyone – spoken or not: If I feel good, I’ll talk with anyone.  If I’m not feeling good, I’ll be kind enough to let you know that I’m really not wanting to talk just now, and I’ll call you / IM you / drop you an email.

Just please – do not be afraid or uneasy around me.  Believe it or not – I can tell…  Because, I recognize those very same traits in others that I exhibited to relatives and friends BEFORE I fully understood all that they wanted was to be treated just like they were the day before they told anyone they had cancer.

My name is Rick, and I have cancer.  And, it’s OK.  :o)

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When “Kinda bad” is REALLY “Great news!”

Posted on October 1, 2009. Filed under: Uncategorized |

The second colonoscopy and ultrasound went very, very well yesterday.  The first “OK, that’s awesome news!” was that the rest of the colon is fine – no apparent other lesions, polyps, etc.  It’s clean.  That is really, really, good news.

So, the rest of the story is now centered on the one known mass. Dr, Schafer did an ultrasound of the mass and the surrounding tissue. The tumor has invaded the wall of the colon and beyond to a couple of small lymph nodes.  That’s the worst of it.  Which, is actually pretty good.  Why?  It’s actually not as bad as I thought it might have been.

The upside is this: It’s treatable.  Because it has not compromised the lymphatic system (short of just a couple small nodes) radiation and chemo will shrink and kill off the cancer before it gets worse and proceeds any farther.  After that, we get into surgery to remove what’s left of the tumor and the colon wall.

The next step is to meet with the Oncologist and consult with him as to the treatment, what order or chemo/radiation/surgery, and to get things going.  I’m looking forward to moving quickly with this, and know that I’m in good hands for the care and the fight ahead.  Radiation and chemo is going to suck – I know that.  But, I’m ready for it and I know that there will be good days and bad days.  Being a realist about what is to come is the best way to get prepared.  The bottom line is that I’m going to be OK, and my “bucket list” can wait a little bit longer.  Or, better yet – I can work on what’s there currently and add new items.  Yeah, that’s a better plan.

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