My Cancer Fight

5 Years

2011-10-07T01:36:00.000-04:00

October 5, 2011 - So today represents a rather important milestone in my life. It is the 5 year anniversary since my last treatment for cancer. I celebrated by seeing Dr. Tonnessen for what should be the last time, at least in a clinical setting. He gave me the normal once over, said that everything looked great and officially declared me cured, at least to the extent that any doctor would make such a definitive statement.

We spent the rest of the time just talking about what has transpired over these past five years and I thanked him for not only believing that I could be cured but for making ME believe that I could be cured because without that faith, I don't think it would have happened.

I've spent the better part of the past few hours reading this blog from the beginning. It's been a long time since I've looked at it and even longer since I've posted. I've mentioned this before but there comes a time in this process when you just want to put it behind you and move on. Slowly but surely, mundane routine takes over once again and you no longer want cancer to be the underlying theme of life. It's somewhat hard for me to believe that I was once that person. Although it's familiar, I have trouble recognizing the voice.

So now I don't really know how I'm supposed to feel. Closure? Not really. Relief? Sure but I somehow was hoping for more. Gratitude? Undoubtedly. I'm thankful for the amazing care I received from my doctors, Tonnessen, Califano, Dar and Hermansen. I'm thankful for all of the love and support I've received from friends, family and total strangers. I'm thankful for the good people at Tomotherapy who developed the technology that not only helped save my life but my quality of life. Mostly I'm thankful for my little boy (who's not so little any more!) for giving me the motivation I needed to beat this disease. A most sincere thank you to all.

This seems like an appropriate point to end this blog. It's time to finally close this chapter of my life and move on. I hope someone has found something of value in these pages. Whether it be advice on treatment options, insight on what to expect, someone to commiserate with or most importantly, FAITH that they can beat this disease, whatever you may take from this, I hope I've been able to help. For anyone just starting this journey, the best advice that I can give you is to own the process. Don't be a passive participant but an active decision maker. If you don't like a doctor or what they might be telling you, go find another one. Educate yourself. Ask questions. Challenge. Do not be intimidated. The more you control the situation the less you will be controlled by it. Most importantly, there IS life after cancer. You can beat this disease and I'm living proof of that. Find the thing that gives you the greatest will to live and stay focused on it.

Here's to good health.

Still Kickin

2009-09-02T22:40:00.000-04:00

September 2, 2009 - So thanks to the encouragement (cojoling, really) of a number of readers, I am posting to hereby declare that I am, in fact, still alive and well. Its really hard for me to believe that its been a full year since I posted last but I guess I can understand the concern on the part of some about such a protracted absence after the nature of my last post.

This past year has been uneventful, at least in terms of my health. Just to put a postscript on my last post, I never did get that follow up PET scan. I have seen all of my doctors at least once since then and all assure me that if there were something to be concerned with, we would see it by now. They have all stated that PET scans can be very problematic when it comes to post treatment monitoring because after a certain period of time, anything that shows up on one is much more likely to be a false positive than an indication of cancer. But even false positives come with the same fear and anxiety as an initial diagnosis so at this point, the recommended follow up is a periodic chest x-ray and an appointment with one of my doctors every three months for a physical exam.

Other than that, I still feel fine and things are still completely back to normal. The only lingering effect from my treatment is still a bit of dry mouth but it is easily managed. Its really difficult for me to imagine that three years ago at this time I was knee deep in the misery of radiation treatment.

I am encouraged to know that for this type of cancer, 3 years post treatment is generally viewed as the 'all clear' milestone. Technically it's 5 years but statistically speaking, I should be ready to celebrate in about a month from now. I think I will probably bite the bullet and have that last PET scan at the three year mark just to make sure but at this point, I'm expecting the best.

Just to prove life does return to normal, here are a couple of pics from this year's ski vacation -

Reality Is Never Far

2008-08-04T23:17:00.002-04:00

August 4, 2008 - The two year anniversary of my cancer diagnosis (June 28) came and went with little fanfare. OK, no fanfare. I never mentioned it to anyone. I know there are people who like to celebrate each and every milestone achieved during this process and I respect that. I think I've just grown weary of the whole thing. I have dwelt on cancer for so long, its impact on my life has been so overwhelming, that naturally I begun to try to put it behind me.

In the annoying words of Lee Corso... 'not so fast my friend!'

I had my routine 6 month PET scan in June (to the extent that any of them are 'routine'). Since my initial diagnosis, this was the fifth PET scan that I've received and for the first time, I wasn't completely anxious in the days leading up to it. Sure, it was on my mind but all of the previous scans were preceded with an impending sense of dread. Not so this time which obviously means that this time the results were not favorable. OK, maybe that is too strong a statement. I'll call the results questionable.

And just like that, it all comes rushing back.

I should have known. In fact, I think deep down I may have known when I didn't get the usual immediate follow up call from Dr. Tonnessen with the 'all clear' . I told myself that I was going to be seeing him in a few days for a follow up appt. to go over the results so he was just saving it for then. But the reality was that I had become complacent; dismissive. I began to let the idea that all of this was behind me creep in. That life was truly almost back to normal and I could finally exhale.

Then, BAM! The spectre of cancer shows up to smack me in the face and let me know that its not going anywhere. Not yet at least. Maybe not ever. And with it all of the fear, anxiety and depression from exactly two years ago - familiar as it ever was. And despite my best efforts, just as I was then I find myself becoming sullen and withdrawn. I don't want to go through life this way but I don't want to make the mistake of letting my guard down again.

In the interest of full disclosure, Tonnessen is of the belief that this is nothing and told me that this is not uncommon with PET scans. I saw Dr. Califano a few weeks later and after a thorough physical exam, he said the same thing. But it is all tempered with the discouraging refrain of "we'll keep a close eye on it." IT.

So now we wait... again. For now on though, the gloves stay on.

Kailee's Run

2008-05-18T14:12:00.004-04:00

May 18, 2008 - There is a little girl in our neighborhood who is fighting cancer. Kailee is 6 years old, the same age as my son, and she has a rare form of cancer called Rhabdomyosarcoma which in her case cannot be treated with surgery because of its location in her head and neck. Here is a picture of Kailee:

She is a beautiful little girl. After learning of Kailee, I read her full story on her website which you can find HERE. I found myself particularly drawn to her situation because her tumor is located in the head and neck region as are the majority of Rhabdomyosarcoma cases. She underwent 5 weeks radiation treatment in much the same fashion that I did, bolted to a table with a tight, constrictive mask. I know how uncomfortable and unnerving it was for me, a grown man. I can't even begin to imagine how horrific this must have been for this little girl.

To help raise awareness of Kailee's condition as well as funds for her ongoing treatment, the first annual Kailee's Run was held last weekend, a 5K race through our neighborhood. The response was truly overwhelming. And although I have never been a runner (I really don't like it at all), Michelle and I decided to give it a shot and even enlisted a number of our friends to join us. I am proud to report that not only did I run the entire 3.1 miles, I didn't even finish last! In fact, I finished it in about 30 minutes which, all things considered, is pretty respectable if you ask me! Don't believe me? Here's PROOF! Scroll down to number 119 and there I am. They're having a second race to benefit Kailee soon, a 5 miler, which I'm not sure I'm up for but I'm going to give it a shot.

Before the race, I had a chance to meet Kailee and her mom. I wanted to let her know that she and I had something in common and show them both that life doesn't end with cancer. I wanted them to see that even someone like me, barely 18 months removed from my own Stage IV cancer treatment, can train for and run a competitive race.

In the fall, Kailee will go back to school and get back to being a kid again. Like any of us who have been diagnosed with cancer, I'm sure her long term prognosis is in doubt and that's truly a shame. But at the same time, I'm happy for Kailee. She still gets to see the world through kids eyes which is such a tremendous blessing for her. She'll probably never have to truly rationalize the seriousness of her condition except maybe in hindsight someday when she's moved well beyond this point in her life.

I would encourage anyone who reads this to please spend a few minutes on Kailee's website and if you're so inclined, sign up for her next race or maybe donate a few dollars to her cause.

Thank you.

Just Another Day

2008-04-10T00:37:00.003-04:00

April 9, 2008 - First, to answer all of the emails I've received, I am still here and (to the best of my knowledge) am still fine.

Today I did something that less than two years ago, I really wasn't sure I would be able to do. I celebrated my 37th birthday. It was uneventful really. My gift to myself was taking my son to a baseball game and having an opportunity to spend time with him... an opportunity to watch him enjoy being a kid. I honestly can't think of a better way to spend a day.

I feel like the concept of 'birthday' has changed for me. In a way, I think it should no longer be about the day that I was born but more about the day I was re-born. By that I mean the day I ended my treatments and began the long process of recovery because for someone with cancer, its at that moment that life begins anew. That is the anniversary we should celebrate because between each one is a year's worth of days no longer taken for granted. A birthday should be a celebration of life not a subtle reminder that we are inching ever closer to our eventual deaths.

But inch ever closer we do. I think that on the milestone birthdays especially, (30, 40, 50, etc.) the natural tendency is to look back and realize how quickly the years have passed. When time becomes the most precious commodity as it is for those with cancer, the realization of how quickly it passes is heightened tremendously. A day passed is a day lost. But at the same time, for me the next three years feels like an eternity that I long to be able to put behind me so I can reach the coveted 5 year cancer-free mark. It is truly a strange paradox.

For now though, I'll enjoy what's left of my day.

Happy Thanksgiving!

2007-11-27T22:08:00.001-05:00

November 27, 2007 - Still here.... :-)

Yes, it was a very happy Thanksgiving indeed! It's hard to believe but it's been over a year since the end of my treatment and to the best of my knowledge, I am cancer free! My 1 year PET scan was completed a few weeks ago and there are no signs of recurrence at this point so the 1 year milestone has been achieved. I'm told that this is a very significant milestone because the recurrence rate for the type of cancer that I had is highest within the first year. And while a "cure" is still technically measured as 5 years, for SCC of the Head and Neck, 3 years is the unofficial measuring stick. If I make it 3 years cancer free, according to Dr. Tonnesen, I can probably start feeling really good about putting all of this behind me. Easier said than done I suspect but it is good to know that I'm probably now past the largest hurdle. I can't let myself get too comfortable though.

We spent this Thanksgiving at Disney World in Florida. It was a surprise for Mason who is now 6 and just tall enough to ride all of the cool rides! I could write for hours about what it meant to be able to experience firsthand the sheer joy and enthusiasm of my boy so I'll just say it was very profound for me and leave it at that.

Physically, I feel great. Taste is 99.8% back to normal. It really never even occurs to me any more and there is nothing I can't eat. Some dry foods still (and will always) require a little water but its hardly an afterthought at this point. It's funny as I read back through my posts from this time last year how afraid I was that I would never enjoy food again. I feel safe in assuring anyone who may be going through this now that it does get better... much better.

Which brings me to life in general. Part of the reason (the main reason really) that I haven't been nearly as diligent about posting as I'd like to be is the fact that my life is completely, 100% back to normal (to the extent it was ever 'normal'). This time last year I felt like cancer defined me. It was all consuming. Everything that I thought, felt, feared and hoped was in the context of my cancer. And while cancer will always be part of what defines me it is no longer some omnipresent burden that I am forced to shoulder. Now... it's kind of like your nose. You know its there and you're reminded of it when you look in the mirror sometimes but you certainly don't obsess about it. In the theater of my consciousness, cancer has now moved a few rows back and as more time passes, I suspect (hope) it continues to do so. It will always have a seat somewhere, but its view of the stage will get worse and worse!

So on Friday, I go to Hopkins for the last of my expirimental HPV vaccines. That has been a very interesting process which follows a pretty rigorous protocol of shots, site evaluations, follow ups and testing. All are done according to a predefined schedule that isn't exactly convenient (driving up to hopkins) but hopefully contribute to the good of humanity somehow. Or at least the good of my long term health. The shots themselves aren't too bad save for the logistics of getting up there to get them and having to go back for subsequent evaluations and testing. What did kind of suck was the process of "Leukopheresis" that has to happen at the beginning and end of the trial. Basically, you're hooked up to a large machine by very large needles in each arm. Through one needle, blood flows out into the machine where it is seperated and certain white cell components are extracted for measurement. The remaining blood is then returned to the body through the other needle. In all, this process takes two hours (or more when the blood doesn't flow like it should) during which you cannot get up or even move your arms. God forbid you have to go to the bathroom. This is before and after the trial to measure the effect, if any, of the vaccine on these particular white cell components. After my "booster" shot this weekend, I am to be evaluated periodically over the next 15 years. 15 YEARS!!!!! That's what I call optimism!

Well that's about all I have for now. The Terps managed to sneak their way into a bowl game this year so that is yet another cause for celebration. To those of you who have been sending me emails, so sorry for not responding sooner. I promise to check that account much more frequently!

A year later...

2007-06-28T21:33:00.000-04:00

June 28, 2007 - Exactly one year ago today I was diagnosed with head and neck cancer. Just like that day last year, today was very hot and rainy.

It's really very difficult to describe how reaching this milestone, to the extent that this is a milestone, feels so I won't bother trying. I will say that there were countless times when I honestly doubted I would see this day. And yet, here I am. Typing away.

You may wonder why it's been 5 months since my last post. Well, I guess that is a testament to the fact that there truly is life after cancer. I've been living my life. Mundane and stressful as it ever was before this began but with a new appreciation for, yes, even the mundane and stress.

That's not to say that cancer isn't still ever present. It is. I think about it, almost constantly and it's been so long now, it has almost become second nature. One does grow weary, however, of that constant feeling of impending doom. Like one day I'm going to wake up and it's just going to be back. Just like that. As though it had only been hiding all this time but never truly left. It's like walking around all day feeling like there is a large, heavy blade directly over my head and its being suspended by the thinnest of threads. One misstep like eating the wrong food or drinking a beer or not exercising enough or exercising too much... one misstep and that blade comes crashing down right on top of me. Such is the life of a cancer survivor but it's better than the alternative, I suppose.

BTW, please don't refer to me as being "in remission." I hate that word "remission." To me it means you've still got cancer, it's just taking a break. One either has cancer or doesn't. I like to believe that at this point, I do not have cancer.

Having said that, of course, there have been plenty of opportunities for my paranoia to run rampant. So since my updates in January, I have been back in for checkups with both Califano and Tonnesen. All seems well. I had a PET scan on May 5th that came back clean. However, stupid me coerced the technician who took the films to tell me if he saw anything. He's not a Dr., mind you, but I figured he could at least see if something lit up. He told me he thought he saw something and I proceeded to panic for the next 48 hours until Tonnesen was kind enough to call me with the actual results. Most recently, I've noticed two small lumps in the right side of my neck, down near my collarbone. The reader can imagine that I'm pretty thorough in checking my neck for anything out of the ordinary every single day. So one day there's nothing there and the next (Father's Day to be precise) there they are. This was on a Sunday and the following Thursday, I was back in to see Tonnesen after having seen Califano two weeks prior. Tonnesen says he can feel them but they don't make his fingers 'tingle' which, for the most part, is good enough for me. I asked if they were something, would they have shown up on the PET from 6 weeks ago and he said that they were so small, they probably wouldn't show up on a PET now. As a point of reference, both nodules are about the size of a pinto bean, give or take. Tonnesen chalks them up to the normal "lumpiness" that we all have. Don't think I won't be keeping an eye on them though....

In another development, I have been chosen to participate in a clinical trial at Hopkins for a drug that may help my body's natural defenses recognize and fight the particular type of cancer I've had. I'm not sure if I mentioned this before but my cancer was positive for HPV-16 which seems to be more and more common these days for young people with head and neck cancer who are non-drinkers / non-smokers. Apparently there is enough of a correlation that the medical community is willing to finally step up and say that there is, in fact, a causal relationship. This research is actually being spearheaded at Hopkins by Califano, among others, so I feel very fortunate that I found him. Anyway, I will be one of 6 people taking the highest dose of this drug that they will administer. So far, they have had 3 test groups of 4 people each, each subsequent group receiving a increased dosage. From what I'm told by Dr. Gillison (the head of the trial) the results to date have been very, very promising. I really like Dr. Gillison, despite the fact that she's a dookie! (Duke University alum for those of you who don't follow the petty rivalries among college athletics). Anyway, I head up to Hopkins next week for the first step in the trial. I'll report on it afterwards.

One final quick note. The company that built the radiation machine I was on, Tomotherapy, gave me a call out of the blue a few months ago. Seems their crack marketing dept. does a good job of keeping on top of the "word on the street" and happened across this blog. They asked to do a profile of me for the Patient Profile section of their website. I wasn't quite sure what to make of it but sure enough, after a couple of phone interviews, they came all the way from Madison, WI with a photographer to take pics of me and family. You can read the profile HERE. It was a good experience and the folks from Tomotherapy couldn't be nicer. They still stay in touch! Not to sound like I'm shamelessly plugging them but I am 100% convinced that my treatment and recovery wouldn't have gone nearly as well had I chosen a different radiation option.

I guess that's all for now. For all of the people that have stayed in touch, thanks and hang in there....

Good News!

2007-01-27T09:39:00.000-05:00

January 27, 2007 - The biopsy results were negative! So, I guess that makes me officially cancer free, at least for the time being. That's about 4 months down and 56 to go!

Life is essentially back to normal. I still get alot of "you look good" or "you sound great" or comments to that effect. All well intentioned I'm sure but really, lets move on. I saw a t-shirt in my wife's US magazine that said "I know I look Good!" that I think I'm going to get. I know people often don't know what else to say and that it's meant to be complimentary but at this point, I'd like to think I'm beyond any cause to look anything besides 'normal.' Now, if people feel compelled to tell me how strikingly handsome I am, that's another story! J/J.

Anyway, my next step is a follow up with Dr. Tonnessen in March and then Califano the following month. I'll continue to post information as it becomes available.

On a different note, I've been thinking about this NASCAR driver who recently passed away from head and neck cancer. I forget his name but he was fairly young, maybe in his late 40's? Anyway, he was diagnosed about a year ago with oral cancer and then went through chemo and radiation treatment. I believe he was all clear for 3-4 months before having a recurrence in his neck somewhere. It was just a few months after discovering the recurrence that he died. Very sad and very scary to think that this person could die from this disease less than a year after he was initially diagnosed. This is the fear that keep me and others like me awake at night.

I'm Still Here

2007-01-13T08:17:00.000-05:00

January 13, 2007 - First, happy new year to all. Yes, the rumors of my demise have been grossly exaggerated... or something like that. Just kidding. There have been no rumors to that effect that I'm aware of anyway. It has been a month since my last post, however so my apologies for that. Between the holidays, starting back to work full time and working on getting my basement finished, I've been too busy to think of much else which is good because these last few weeks have been pretty stressful.

General updates... Physically, I feel and have felt fine. I could be (read: should be) working out again were it not for the fact that I've been so lazy. And busy. The better news is that my taste is all but returned. A few things are still a bit bland such as tomato / pasta sauce but on the whole, my taste is normalized to the point of not having to think about it any more. Dryness is still a bit of a problem and the one lingering effect from my radiation treatment and I fear it will never fully return to normal. It is manageable, however, and in the grand scheme of things a small price to pay for my health if, indeed, I manage to stay healthy. The best way to handle dry mouth is, not surprisingly, by drinking COPIOUS amounts of water. I'm up to somewhere close to 3/4 gallon per day, particularly with food. It also helps with the taste of dry foods. Sadly, dry foods for me have consisted mainly of Christmas cookies for the past few weeks. Suffice it to say that maintaining my weight is no longer a problem! For those of you who may be experiencing this, I recommend you subscribe to a water delivery service. I subscribe to Deer Park and for approx. $30 each month, I have five 5-gallon jugs of water delivered to my front door which are served from a water dispenser one can buy at most home repair or super stores (Home Depot, Walmart, etc...) for anywhere from $70 - $100. It's certainly much cheaper than buying the equivalent amount in cases of bottled water, easier to transport and better for the environment. You may be asking why I don't simply drink water from the tap and my response would be "does anyone still drink water from a tap???" If you have a filter, maybe but besides the awful taste of tap water let me just say that I've had cancer once, I don't care to get it again!

So that's the good news. Not to say that what I'm going to say next is bad news but it may turn out to be. As I think I've mentioned previously, I've had this "nubbin" at the base of my tongue which we discovered after my radiation was completed. Dr. Tonnesen never seemed to think it was anything to worry about but he did order an early PET scan just to be sure since the bump is large enough that if it were cancer, it would probably show up. The PET scan was clear. Still, Dr. Califano (as I imagine any good surgeon would) thought it best to be sure by doing a biopsy of the site. So just yesterday, I submitted myself to a direct laryngoscopy with biopsy... a technical term to describe a tube with a camera that was inserted in my throat to get a better look at things. A representative sample of both superficial as well as deeper tissue was removed for biopsy, the results of which I will not know until Thursday or Friday of next week. Dr. Califano did tell Michelle while I was in recovery that from what he could tell, everything looked normal and that it probably is just scar tissue from the original primary tumor or possibly scarring that can occur from radiation trauma. He apparently did something called a mini-biopsy (Michelle didn't think to ask what, exactly, a mini-biopsy entails or the value of the information derived from said mini-biopsy) which appeared normal so he doesn't expect any surprised when the full pathology results return. In her defense, she was probably still preoccupied with the accident she had the day prior with a rather unfortunately placed fire hydrant. Totally off topic but I can now say that in the time I've known my wife she has owned four vehicles... now all of which I will have taken to the body shop. At least this time she didn't rear-end someone while putting on makeup or back over our picket fence.

Anyway, the holidays and work have been a welcome diversion but the truth is, the thought of this biopsy has kept me on edge for the past few weeks. Most who know me will probably tell you that I've reverted to that subdued, introspective self over these last several days and my nerves have been shot. Sometimes I find myself shaking uncontrollably. Even now as I type just as I think about it. Don't get me wrong, I'm relieved at the positive outlook offered by Dr. Califano and I do believe (for the first time perhaps) that the results of this test will be favorable and that I will officially be able to consider myself cancer free. But it doesn't go away. The spectre of cancer returning is something that we live with every remaining day of our lives. Perhaps if I'm fortunate enough to live another 15 or 20 years without any sort of recurrence I will have learned to not constantly dwell on it but for now and for the foreseeable future, it seems I will be preoccupied with this fear.

Well, that's enough of that. I've never been one to make New Years resolutions but this year I'm going to. My resolution is to do all of the things that I said I was going to do through the pages of this blog but haven't really done yet. I'm going to start going to counseling and I'm going to try the alternative treatments that I've mentioned such as Reiki, guided imagery, meditation... maybe I'll even take up yoga. At the very least I think I deserve a massage. ( a REAL massage, not Miss Lillys, Buckey) No goal is worthwhile unless it's time bound so I pledge to do all of this by my birthday which is in April.

Sorry for the long post. For all of you who have asked me, I'll try to keep the pace a little more brisk and the posts a little less wordy from now on.

Oh yeah, Go Ravens! Beat the Colts today and that scum-sucking, backstabbing, sneak-out-in-the-middle-of-the-night-because-we're-a-bunch-of-cowards family that owns them (If you're not from Baltimore, this probably makes no sense to you... sorry).

10 Weeks Post Treatment

2006-12-15T11:30:00.000-05:00

December 15, 2007 - Not really too much to report this week. We've been busy focusing on the holidays, running to and fro.

I did meet with Tonnessen on Monday and that went well. He felt the nodule on the back of my tongue and said that to him it still felt unremarkable, even more so than the last time he felt it. I reached down there too and it still feels like a pea to me. Whatever. I'm going to rely on the PET scan and assume it's nothing at this point. No point in dwelling on it.

On Wednesday I went to a local SPOHNC chapter meeting, my first one. SPOHNC stands or Support for People with Oral Head and Neck Cancer and their website can be found HERE. It's a nice group and there are no mandatory dues although the newsletter costs about $25 per year and they will certainly ask for (and deserve) donations to the cause. The meetings usually have a guest speaker on a topic of interest to people who have undergone treatment for this particular type of cancer. There were about 10 people at this particular meeting and it was very interesting to hear everyones story. One of them, Roger I believe is his name, is a 7 year survivor and it struck me that he is the first person that I've actually met or spoken to who has survived more than 5 years. I know these people exist in the abstract but to meet one in person was nice. The other thing that struck me about the meeting is how fortunate I am that I seem to have tolerated the treatments much better than most. They were all very surprised when I told them that I was only 10 weeks out from the end of my treatments because of how I looked, spoke, etc... Many of these people had a very hard time and have very visible lasting effects even two and three years later. For the most part, I feel almost completely back to normal already.

Taste is still coming back seemingly in chunks. It will stay consistent for several days and even regress a little once in a while but then I'll wake up and it is noticeably better. I can actually enjoy certain foods again.

That's all for now.

9 Weeks Post Treatment - Follow Up PET Scan

2006-12-06T23:58:00.000-05:00

December 6, 2006 - Today is officially nine weeks since the end of my treatments. It is also the day of my first follow up PET scan. Normally, I'd have to wait another three weeks or so for this follow up but Dr. Tonnessen ordered it earlier than he normally would because of the "nubbin" that can still be felt on the base of my tongue. I've been reaching down there periodically to feel for it and yep, it's still there. It's at what I understand to be the site of the primary tumor and feels to be about the size of a pea. OK, maybe a smallish pea. Anyway, as I've already reported, Drs. Tonnessen and Califano, while not particularly concerned about it yet, have taken enough of an interest in this thing to term it "something to keep an eye on" and, thus, the early PET scan. I wouldn't be worried about myself if it weren't for the fact that both of them stated during the course of my treatment that this thing had disappeared. If it's just left over scar tissue, no problem. But to think that it went away and is now back suggests that it's something more than just scar tissue.

Anyway, the PET scan today was just was I remembered it. And so was my anxiety level. I guess the anxiety leading up to the PET scans never goes away. I'm obviously worried about this "something to keep an eye on." I'm also concerned about some pains that I've been having the past several days. Starting on my upper back and chest and radiating down both arms, my skin is painful to the touch. Almost like I'm sunburned. If it weren't for the fact that I feel this on both sides of both arms, I'd chalk it up to late effects from the radiation. But this is just weird. My clothes literally hurt. It's not excruciating but it is uncomfortable. What's more, it seems to be more focused in certain spots and those spots seem to move around. I don't know how else to describe this and I know it sounds crazy. My shoulders have also been very tight and sore and my throat has been bothering me lately. These things may just be the result of stress and they may be totally unrelated to each other. Who knows? I just know that it's a little discouraging to think that I've made it through two month with relatively little to no pain and now this?

I was told that the results would be ready in 48 hours and sent to Dr. Tonnessen whom I am already scheduled to meet with on Monday. Imagine my surprise when I received the following voicemail just a few hours later (recounted here verbatim):

"Hi, it's Dr. Tonnessen from Radiation Therapy. Ummm, I left a message just now for Mike. It's about 4:15 on Wednesday. Ummm, PET scan was terrific. Ummm, quote 'favorable response to therapy... resolution of previously noted abnormalities in the left neck and base of left tongue... no evidence of spread elsewhere... blah, blah, blah.' Ummm, just what we hoped! Hang in there. bye-bye."

I can't begin to describe how I feel about this so I won't bother trying right now. I will say that I am eternally grateful to Dr. Tonnessen for calling me and leaving me that message as soon as he got the results. He knows that I would have agonized over this all weekend. I told Michelle to listen to the message without telling her what it said. She cried as she listened.

On another positive note, big improvements in taste over the past week. I'd estimate it to be anywhere from 50-70% back to normal, depending on the food. Things are still dry but nothing alot of water can't take care of. More to come...

8 (?) Weeks Post Treatment

2006-11-27T10:55:00.000-05:00

November 27, 2006 - Again, sorry for the delay in posting. Can it really be almost 8 weeks since my treatments ended? The weeks are really starting to fly by now with the holidays upon us and all. To be honest, there really isn't a whole lot to update right now. I'm still in the holding pattern of waiting for my first PET scans to determine if the treatments were successful.

One thing that is noteworthy I guess is that I am now back to a strictly solid foods diet. The Ensure and Boost shakes have been gone for about a week. I am able to eat an increasingly wider variety of foods as long as they are not too dry although the taste of most things is still very muted and bland. Foods no longer taste "bad" though so I can deal. Thanksgiving dinner was not what I remembered it to be which I can't help but be a little disappointed about but on the other hand, I had no problems with any of it (lots of gravy helps!) so I guess that is worth giving thanks. Maybe by Christmas I'll be able to enjoy it more. Dessert and sweets in general, however, are still an issue although this is probably a blessing in disguise.

Other than getting ready for the holidays and watching a promising young Terps basketball season, I've been trying to keep my mind off of the ominous message from my doctors about the spot that can still be felt on the base of my tongue. I'm really trying to stay positive but the waiting and wondering gives plenty of opportunity for one's imagination to run wild. We took my son to see a movie over the weekend and one of the previews was for a movie that isn't due to hit theaters until November of next year. That's one full year from now and it occurred to me that I may be watching the preview of a movie that I won't even be around to see. Talk about surrealism, folks.

Six Weeks Post Treatment

2006-11-14T22:14:00.000-05:00

November 14, 2006 - Sorry it's been a couple of weeks since my last post. In all honesty, there was not much to write about last week. Plus, I was out of town for a wedding which forced me to really start eating like a normal person again.

So, first, the good news. My taste is really starting to come back. Things still taste somewhat muted but for the most part, foods are at worst palateable and at best pretty normal. I can't eat anything too dry like breads, crackers, chips, nuts, etc..., because it ends up feeling like I have sand in my mouth due to the lack of saliva which is still an issue but anything relatively moist is ok. Something interesting is that some foods have tastes that I would normally associate with other foods like chicken might be tart like a lemon or tangy like a pasta sauce. It's as though my tastebuds are trying to reprogram themselves. What I still lack is the ability to taste sweet but even that seems to be getting closer.

Now, the bad news or potential bad news I should say. I had follow up appts. with both Califano and Tonnesson over the past two weeks. Both of them felt a small bump on the back of my tongue at the original tumor site which, interestingly, they both referred to as a "nubbin." I too was able to feel it by sticking a finger down my throat. Going through this forces one to get over one's gag reflex pretty quickly. Now, neither Dr. expressed any great concern over this and it is true that scar tissue is not uncommon. Tonnessen actually said that in his opinion, I am cured given the way I seem to have bounced back so quickly from the radiation treatments. What concerns me is the fact that both of them had told me at different points during my treatment that the original tumor had shrunk and eventually dissappeared. In other words, both had stated that they could no longer feel it. So if they can feel something now, what does that mean? If it had always been there, I wouldn't be concerned. It's the absence and subsequent return of this "nubbin" that has me worried. Tonnessen agreed to call Califano to consult with him on it and he called me the next day to say that while they still don't believe it's anything meaningful, it is something to watch so he ordered a PET scan for me earlier than he would normally. I go for that on Dec. 6th. Hopefully the PET will rule out what I fear may be either a return of the disease or, more likely, evidence that the treatments didn't work to begin with. If it is malignant, I'm really not sure what my options would be at that point.

Other than that, I'm feeling fine. I started back to work full time as of today.

4 Weeks Post Treatment

2006-11-02T13:10:00.000-05:00

November 2, 2006 - Today I'm four weeks out from the end of treatment. Life is starting to get back to normal. I thought that I would really be focusing on the fact that I'm no longer doing anything to actively fight this disease but that hasn't really been the case. Part of me feels like this is now behind me. Do I now refer to myself as having had cancer? Am I a cancer survivor? Seems a bit premature for that but I'm no longer a cancer patient and I'd like to think that I no longer have the disease so I guess I'm in a sort of limbo. I'm sure things will be much clearer in about 7 weeks when I have my first follow up PET scan.

It occured to me this week that it's only been 4 months since my initial diagnosis. 4 months! I can hardly believe how much has transpired during that short amount of time. How much has changed. If I survive this, I owe it to the timeliness and sense of urgency expressed by all of my doctors. Of course, I'd like to think that my proactiveness and insistence had something to do with it as well. I read stories from people who spend 4 months just waiting for their treatment to start once they've been diagnosed! Please, if you find yourself in this unfortunate situation, do not be a passive participant. If your doctors are not working on your timetable, find other doctors! This is your life and as far as I'm concerned, that is worth suspending the notion that doctors are all-knowing and that whatever they say must be accepted as gospel. You need to call the shots in terms of when, how and by whom you are treated. Of course, that requires a tremendous amount of research on the particulars of your disease as well as treatment options and facilities.

As for me, I'm feeling much better physically. Taste is still very much an issue but I think I detect the early stages of its return. I have begun to supplement my supplements with actual food. Green beans, corn, plain pasta... generally things that are very moist are OK and have some normalcy in terms of flavor. Certain fruit juices now have a tartness to them that they didn't before and the first couple of sips are even slightly sweet. I just hope that by Thanksgiving, I'll be able to eat a relatively normal meal.

The best news of the week? The Terps beat Florida State and are bowl eligible! WOO HOO! Hopefully I'll be spending New Years Eve at a football game this year!

3 Weeks Post Treatment

2006-10-27T22:07:00.000-04:00

October 27, 2006 - Status Quo. Nothing much has changed since last week. I am making an attempt to eat at least one item of solid food per day but it's still not very good. I think I am starting to get some sense of taste back for sweets since juice seems to have a bit more flavor but it's still a long ways away from normal.

I will see Califano for my follow up on Monday. I hope to have something, anything, encouraging to report then.

2 Weeks Post Treatment

2006-10-19T20:00:00.000-04:00

October 19, 2006 - Two weeks since the end of treatments and no significant changes. My skin is slowly clearing up although it has become very dry and flakey requiring lots of lotion. The cracking around the tips of my fingers is still an issue but seems to be getting a little better. Mouth and throat discomfort is all but gone. However, still no improvement in terms of taste. Chewing gum helps maintain saliva and, at least temporarily, removes the lingering bad taste that is otherwise ever present. I hope to have more significant improvement next week. On Tuesday and see Dr. Dar for a first follow up and the following Monday and see Dr. Califano. That's really all I have for now.

One Week Post Treatment

2006-10-13T22:22:00.000-04:00

October 13, 2006 - Well, it's been just over a week since the end of my treatments and I figured an update was in order. However, the truth is there isn't much to update. I am feeling a little better to an extent. The heavy mucous and mouth sores seem to be subsiding a bit. I have decent energy and stamina. The laryngitis is gone so I can speak again. Sadly, no sign of normal taste yet. But it's only been a week and I'm not expecting miracles. I really just wish I could fast-forward things a little.

The good news... tonight is Midnight Madness (or, as it is now called, Maryland Madness since corporate greed strives to suck all semblance of tradition and nostalgia out of the things we hold most dear) signalling the official start to college basketball season. It is truly the most wonderful time of the year!

I've been passing most of my time reading ( just finished Lunar Park by Bret Easton Ellis - an EXCELLENT book if you're an Ellis fan and if you've read American Psycho) and am now in the middle of David McCollough's 1776 (another excellent book). Frankly, I'm tired of reading books about cancer and cancer treatments. Part of me wants to forget about the whole thing although I know that's impossible. The spectre of recurrence and, in my case, waiting to find out if these treatments even worked will never allow it. I envy those survivors who have managed to regain normalcy. This is indeed a very, very long road.

It's Over

2006-10-04T20:43:00.000-04:00

October 4, 2006 - Today saw my last radiation treatment. 7 weeks. 35 days. 875 rotations in that infernal machine. Countless hours laying motionless on a hard table. Finally, it's all over. How am I feeling? Relieved to be done for sure. Scared for what the future will hold. Anxious that at any given time, the other shoe will drop.

I have to wait at least 10 weeks before I'll know the effectiveness of what I've just endured. That is the earliest I can have a PET scan without a substantial risk for "false positives." During that time, I'm told that the radiation effects that I've been experiencing will probably continue and possibly get worse over the next 2-3 weeks but after that they should begin to subside. Salivary function will improve gradually over the next 12 months and taste should begin to come back anywhere from 6 weeks to 3 months and will gradually improve over the next 12 - 24 months as well. My Short Term Disability insurance wants me to go back to work on October 15, less than two weeks from now. That ain't happening. I've put in for a request to have that extended to November 14 which should give me enough time to heal sufficiently enough to be somewhat effective at work. The biggest radiation related issues I'm dealing with at this point are fatigue - I'm sleeping 12-14 hours per day - terribly thick mucous, loss of voice, poor taste, and to a lesser extent dry mouth, mouth sores and mild pain when swallowing. I've also lost approximately 12 pounds to date. As for the Erbitux, my last dose was yesterday equalling eight total or one more than was originally planned. Since I've gone back on the antibiotic, the acne/rash is not so bad although the tips and joints of my fingers are beginning to crack as though I have small paper cuts on most of them now. They sting but hopefully will be a short term problem.

I want to thank all of the people who have left messages of love and encouragement on this site and have sent me emails and phone calls. It does mean alot to me even if I'm not as responsive as I want to be all the time. I will continue to keep this site updated although perhaps not as frequently in the coming weeks. I believe there is a function somewhere that will let you get new entries via email instead of having to go to the webpage for updates. Look around the site and you should find it. I want to share something that I stumbled on today which is terribly moving and inspirational. It's the story of Dick Hoyt and his son Rick whom I had never heard of. Their circumstances are certainly different than mine but at its core, this is the story of a father's love for his son and the tremendous achievements that can be bourne out of that love. For Rick Hoyt, that love inspired him to do things I'm sure he once thought to be impossible. For me, I'm hoping it's enough to help me beat cancer. If you want to see a short video about Team Hoyt, click here (and get some kleenex.)

One Week Left

2006-09-28T00:34:00.000-04:00

September 26, 2006 - As of today I officially have 5 treatments left to go. I should be feeling good about that but frankly, misery has struck in full force. I can hardly speak thanks to the thick mucous that now coats my throat and mouth. It has caused me to gag on several occassions. I also have a number of sores on and underneath my tongue which makes spitting the mucous out very painful. I am tired and lethargic. I can't imagine this getting any worse but fear that it probably will before it starts to get better. People keep telling me how "good" I look but this is euphemistic for "you don't look nearly as bad as I would expect!" Well, whether or not I look it, I certainly feel it. To top things off, the radiation machine stopped working today... IN THE MIDDLE OF MY TREATMENT! Ugggh. This sucks....

"And down the stretch..."

2006-09-22T13:49:00.000-04:00

September 22, 2006 - So I guess I'm on the last lap. One and a half weeks to go. Really, not too much new to report. I'm just so ready for this to be over. I'm starting to wonder what it's going to be like once it is over, though. As bad as treatment is, it is still somewhat of a comfort. It gives you a sense of actively fighting this disease. Once that is gone, then what? These last three months have been a whirlwind of doctor's offices, procedures, surgeries... all in an effort to rid me of cancer. Is the fight over after next week? How do I continue it on my own? As anxious as I am to be done with all of this, I'm equally terrified to be left to my own devices.

Dr. Dar told me this week that my skin has cleared up enough to stop taking the antibiotic. Reading between the lines, I think what he was saying was he wanted to make sure the Erbitux is still working without alerting me to the possibility that it might not be.

Since I don't have too much to say, I thought I'd post some pics to show what it is I'm fighting for.

Mason Loves Testudo!

Mason Loves his Mommy!

Mason Loves his... Soccer Coach!

Almost One Year Ago Exactly! Happier Days...

Calories

2006-09-17T23:52:00.000-04:00

September 17, 2006 - So my days are now consumed with consumption. I find myself completely pre-occupied with the number of calories that I take in and it isn't easy. As a reminder, I need at minimum 2500 calories and 130 grams of protein each day which would be alot for me even if there was something that I actually enjoyed eating. At this point, my nutrition comes almost exclusively from boost shakes or fruit smoothies, neither of which are the least bit appetizing to me any longer.

[ASIDE] - Wow, this is really strange but the most amazing commercial was just shown on TV. It opens with a man, probably in his 60's walking into a small gathering in his honor. It's September 10th. Not his birthday but his annual "I am alive party." He explains in voice-over that 6 years years ago when he was diagnosed with prostate cancer he thought his life was over. His father and grandfather had both died from the disease and he had given up. Why go through the pain of surgery and chemo when the odds are stacked against him so? But his urologist wanted him to fight and asked if he had any pictures of his family. As he displayed the pictures, the doctor says that he just answered his own question. The narrator then said that it wasn't the surgery and chemo that saved his life but that moment in the doctor's office when he became convinced to fight. The spot closes with an ad for INOVA Health Systems and the narrator saying that this is the way the people are at INOVA. They never give up on a patient. I mention this only because it is timely and inspiring and also because I am being treated at INOVA. www.inova.org. They really are good people.

OK, back to counting calories. The one good thing about nutrition from a bottle is that it is pretty easy to keep track of what you're taking in. The Boost Plus shakes have 320 calories and 14g of protein per 8 ounces which is pretty good. There is also a product made by Carnation called VHC (Very High Calorie) that has 560 calories per 8 ounces but judging from the free sample I tried, that stuff could be used in place of Elmers glue if you're ever in a pinch. I don't even want to know how much weight I've lost so far but it is enough that my mask is no longer fitting me properly. So, I need to go in early tomorrow for an adjustment since my last few treatments have required multiple scans in order to line me up properly. This takes extra time and that is not a good thing.

The taste and weight issues reminded me of a web diary that I read the first night I was diagnosed. It was written by a woman in the UK back in 2002 who had the same kind of cancer as I with an unknown primary site tumor. I don't know if it is because she was in the UK or if it was because she went through this 4 years ago but it appears she did not have IMRT but the older XRT radiation that simply blasts a broad area and she had a really tough time of it. You can read her diary HERE. She suffered significant burns, which she is kind enough to post many pictures of, and internal blistering in her mouth and throat. I was most interested in her detailed description of her taste issues which were also significant. Unfortunately, her updates from 2 and 3 years beyond initial treatment showed little improvement and it is clear that this is a source of great distress for her. I can only hope that the fact that beyond my taste issues, the side effects from my radiation have been negligible and the advanced technology that I'm fortunate enough to have access to will ultimately mean that I will be able to enjoy food again... sooner rather than later. Time will tell but if I'm still dealing with this next football season, I'll be distraught.

Michelle and Mason are away for the week. We had a planned vacation at Nags Head and the house was paid for so even thought she was reluctant to go, I insisted. She and Mason could use the time away from all of this. So, I'm a bachelor for the week. Alone with my thoughts and my Boost.

Number 20

2006-09-13T19:45:00.000-04:00

September 13, 2006 - Today was radiation treatment #20 meaning I have completed 4 full weeks with 3 to go. It feels good to be past the half way mark. I didn't know what to expect going into this but I'm sure I expected it to be worse than it has been to this point. I know I have 3 weeks to go and that the effects are cumulative so I don't want to jinx myself just yet.

Today is Wednesday or the day following my Erbitux treatment which I like to refer to as "hiccup day." They are quite annoying and they're not like normal hiccups that go away after a couple of minutes. They last for up to 15-20 minutes at a time and can be rather violent. I'm afraid I might throw my back out. To be clear, the hiccups aren't caused by the Erbitux but by the Decadron (steroid) that they give me prior to the Erbitux. In addition to Decadron, I'm given Benadryl and Zantac. I hate the Benadryl because it knocks me out. I wasn't going to go in for the Erbitux yesterday because I thought it had been moved to Thursdays. But, thanks to a scheduling snafu, I found myself racing over there at 4:00pm to get it before they closed for the day. You see, they mix the Erbitux the day of the treatment and it doesn't have a shelf life so if they don't administer it that day, they literally have to flush $9,000 down the drain.

I know I complain about this incessantly but the taste thing is just wearing on me. I ate some egg drop soup this evening that tasted like dishwashing detergent (or so I would guess.) I've started to have, and this is not a joke, dreams about food. When I was 16, I worked at a pizza joint and every night, we'd call other restaurants in the area to trade food. There was a Burger King right next to us and in exchange for a few pies, they'd bring over bags upon bags of everything they sold. Good lord did I love trading with BK. So, I had this dream about sitting in the storage room with my co-workers just mealing on Whoppers, chicken sandwiches, fries and shakes until I could barely walk. It's funny, I now worry about how I'm going to consume 2500 calories in a day when back then, I could throw down two or three times that in one sitting. The biggest problem here is that I'm losing weight that I can't afford to lose. I'm afraid to weigh myself at home and I've resulted to tricks each week at the doctor's office to keep them off my back. According to their measurements, I've only lost 2 pounds or so which they are happy with. The reality is I'm probably closer to 8-10 pounds lost at this point. I've managed to wear heavier clothes each week at weigh in and for this last one, I snuck my wallet and PDA onto the scale with me. Next week I'm going to have to shove bricks in my pants.

Almost Half Way

2006-09-08T22:21:00.000-04:00

September 8, 2006 - Today was treatment number 16 of 35. Two more and I will be more than half way home. The radiation effects are becoming more apparent every day. I've discussed the taste issues at length already so I won't dwell on that except to say they're certainly not getting any better. I can't imagine it could get worse at this point but I'm sure that I'm probably speaking too soon. Mealtimes are such a dreaded chore now which is one of the most depressing parts about this whole thing. Anyone who knows me knows I've always loved to eat. There is NOTHING enjoyable about food anymore. People that have been through this tell me that it will come back but at the very least we're talking 3-6 months and in some cases, longer than that. I can't even begin to imagine going that long without being able to enjoy a meal. As of now, I'm basically on a liquid or pseudo-liquid diet. Mainly I'm getting calories and protein from Boost shakes which, surprisingly enough, taste normal to me. I'm also drinking Met-RX protein shakes and smoothies from Robeks which have almost no flavor at all. One 32 oz. Robeks smoothie can account for 30-40 grams of protein and 500-700 calories so that's good. I can also get down cold cereals (raisin bran mostly) if I let it get really soggy. Besides this, I'm limited to soups and plain noodles with lots of butter on them. I tried eating some plain turkey tonight and it really irritated my throat which is starting to get sore. You don't notice how many commercials there are for food on TV until you can't eat any of it. Pizza, burritos, buffalo wings, gyros, my sister-in-law's taco pie... ugh. How I miss these things.

A bit of good news this week. My liver enzyme counts that were off the charts last week have come down considerably. It wasn't the Eribitux causing the problem. Dr. Dar and I both think it's one of the supplements I was taking, either Maitake Mushroom extract or Milk Thistle, that caused the liver damage. I stopped taking all of those as soon as I was told that there was a problem so these are the most likely cuprits.

This past Wednesday, Spetember 6th was my mother's birthday. It also happens to be the 3 year anniversary of her death... from cancer. I made the 2 hour drive to New Market, Virginia to visit her grave. As I sat there, alone, in the cemetary, I guess I expected to feel some sort of communion with her or to even see her come walking towards me among the headstones. But instead all I felt were the gnats flying in my ears and up my nose. I sat there for an hour, just talking. I told her that I missed her and that I could really use her help right about now. But, unfortunately, I left feeling somewhat unfulfilled and more focused than ever on the potential of my own impending death.

My mother smoked for almost 40 of her 54 years so when we got the news that she had small cell lung cancer, it really came as no surprise, at least not to me. She managed to survive 18 months from her diagnosis although the end came very suddenly. I regret that I didn't see her more while she was sick. I also regret that I didn't tell her everything I wanted to before she died. Mostly I regret feeling angry with her for what I felt she brought on herself. And yet, I do feel angry. People have the right to smoke because it is legal and we all possess free will. Unfortunately, no consequences are ever suffered in solitude. Second hand smoke is a killer. Our deaths effect many people around us who are left to grieve. Our society is forced to foot the bill for smoking related illnesses through higher taxes and higher insurance premiums. If you smoke, quit. Don't tell me you enjoy it. Don't tell me it's too hard. Don't tell me you only smoke when you drink or that right now, you're under too much stress. Just quit. There are too many resources available today to make it easier to do so. Do you think it's been easy for me to drag myself to radiation treatments every day when I know it's just going to make me feel like crap afterwards? Do you think it's been easy for me to suffer the side effects that my chemo treatments have had on my physical appearance? No and no. But I make the choice to do it because I want to live for my family. If you smoke, you have the same choice to make. It's easy to live in denial by thinking that it's not going to happen to you but the truth is the odds are overwhelmingly against you and they get worse with every cigarette you light. I don't mean to get on a soapbox here but it is my website and this is something I feel strongly about. I know that many people reading this are smokers and a number of you have families. Do you want to die knowing you could have avoided it? Do you want to die knowing that your children are going to be angry with you for the choices you made and the effect that those choices had on them? You're probably saying, "Well look at you, Mike. You've never smoked but you still got cancer." That's true and I wish I knew why. It's probably not a stretch to say that growing up in a house with smokers or having a mother who smoked while she was pregnant with me had some effect. But who knows? Maybe this is just my lot in life. It doesn't change the fact that if you smoke, you do harm to yourself, to your family and to society at large and if you want to quit, it just takes some will and determination. Do it before it's too late.

Help Wanted: TomoTherapy Repairman

2006-09-03T11:49:00.000-04:00

September 3, 2006 - Sorry for the delayed posting. Thanks to Tropical Storm Ernesto, we haven't had Internet connectivity all weekend. As it is, I'm "borrowing" connectivity from someone in my neighborhood who was kind enough to leave his wireless access unsecured.

So this may sound hard to believe (it was for me anyway) but the $5 million state-of-the-art TomoTherapy Machine is on the fritz! Yes, you read that correctly. It had been getting progressively more tempermental by starting then stopping, having to be reset, communication errors, etc., until finally, on Wednesday, it stopped working altogether. I waited an hour in the reception area only to be told that I would not be receiving treatment that day. This is problematic on multiple levels. One, what would missing a day of treatment do to my overall progress, especially since I'll be missing this coming Monday as well for Labor Day? Two, how disconcerting is it to think that the giant microwave that I have to lay in every day may not be working correctly? As for the first issue, Dr. Tonnessen assured my that one day is no big deal but if it were to become three or four days we'd have to come up with a new plan and he admitted that he didn't know what that plan would entail. Regarding the second issue, it was explained to me that TomoTherapy has a staff engineer and a staff physicist on site at all times so they will get it fixed and there is no reason to be concerned about problems occuring while treatments are being administered. To their credit, the machine was working just fine the following day.

Dr. Tonnessen examined me again on Tuesday and this time said that he can no longer feel any tumor. I took this opportunity to ask the question I should have asked last week which was whether or not this degree of progress is to be expected at this point in the treatments. He told me that it is very encouraging and to be this far along after fewer than 1/3 of my treatments puts me "well ahead of the curve." Encouraging indeed!

My encouragement was dampened this week by a call from Dr. Dar's office. Each week, prior to the Erbitux injection, they take blood to measure blood counts and liver function. Last week they called to tell me that my liver functions were slightly elevated and while not a cause for immediate alarm, it is something they would be monitoring. This week they called again to tell me that my liver functions were significantly more elevated. No one wants to speculate as to what this means so, naturally, my first thought is that that the cancer has spread to my liver. I mentioned this to Dr. Tonnessen on Friday and he told me that's impossible. He said it's most likely due to the Erbitux and worst case scenario, we might have to switch to Cisplatin. However, Dr. Dar insists that it is not the Erbitux because, according to him, Erbitux is not metabolized by the liver and there is no case history of liver complications with Erbitux. Instead, he wants to rule out some sort of biliary duct blockage so he has ordered a sonogram which I will have Tuesday morning. I'm concerned. Very concerned. I think I've gotten over my initial fear of liver cancer but something just doesn't add up with all of this. Before I started the Erbitux treatments, my liver functions were just fine. In fact, they tested me a week before starting treatments and they tested me just prior to the first treatment as they do prior to every treatment. It wasn't until after that first dose was administered that my counts started going up. I guess we'll see what the sonogram tell us but I think they're looking for gall stones. If I do, in fact, have gall stones, they will have to be surgically removed.

Now onto my favorite... the weekly bitch session. I now have a collection of ulcers along the left side of my tongue that burn whenever I put something in my mouth. The thought of eating anything anymore has become totally reprehensible to me. Everything tastes the same and that taste is terrible. I can't really describe the taste but I imagine it's something like dirt or burnt tree bark. My throat still feels OK, so thank God for small miracles, right? I've stopped getting on the scale but I know I'm losing weight and am not looking forward to the stern lecture that I will receive this week from Tonnessen's nurse.

As for the rash, it's as bad as ever. I broke down and finally started taking the Doxycycline that Dar prescribed. I guess it's helping a little but it's probably tantamount to using a garden hose to fight a forest fire. The itch is incessant and I've used every topical cream I can think of on my scalp to try to find some relief. Most anti-itch creams last for a couple of hours but I'm still waking up most nights because of it.

Thank GOD college football has started. At least my Terps pulled out a relatively easy, if uninspired win yesterday. Sorry for not posting, Noli, but if you saw me right now, you'd understand why tailgating is out of the question.

Quarter Mile Mark

2006-08-27T19:30:00.000-04:00

August 25, 2006 - Today was my ninth radiation treatment which effectively makes me 25% finished.

I met with Dr. Tonnessen on Wednesday who examined me by feeling the tumor at the base of my tongue. He indicated that it was noticeably smaller, maybe shrinking from the size of a pea to a "split-pea." My initial response was that this is obviously a good thing but it occured to me later that I really don't know if this is something to be excited about after one week of treatment or if this degree of progress is par for the course. I suppose those things aren't mutually exclusive, however, so I'll remain guardedly optimistic. Really, in my mind I was hoping the conversation would go something like this:

Tonnessen - "The tumor is noticeably smaller. It's about 1/2 the size it was last week."
Me - "Is that a good thing or is it to be expected?"
Tonnessen - "It's a very good thing and serves as clear, unequivocal proof that you will be cured and will never have to worry about cancer again!"

Is that too much to ask? As for my weekly meeting with Dr. Dar, he examined the beginning stages of my Erbitux "rash" (read: horrifying acne) and made the comment that at least with colon cancer patients, that rash is considered a good thing because those patients who exhibit it generally do better. Of course, no definition of "better" is offered nor does this necessarily mean that such results hold true for head and neck cancer patients. As he is wont to do, Dr. Dar prescribed me some sort of antibiotic for the rash which, of course, I will not be taking. Don't get me wrong, I really like Dr. Dar but I imagine most medical oncologists like to prescribe alot of medicines. It's what they do.

Now, on to my current condition. The effects of radiation are becoming more prominent. Food has begun to taste different or lose its taste altogether. Many things have a somewhat muted and slightly bitter flavor. Also, the texture of many foods seems different all of a sudden. I tried to eat an apple and had to spit it out. It was like biting into a burlap bag. Even bottled water has begun to taste like it came from a rusty pipe. It just makes the idea of food very unappealing. Mealtime is becoming quite a chore. Fortunately, I don't have any physical discomfort from chewing or swallowing... yet. I know that is yet to come but I'm thankful to have made it through two weeks without it so far. Aside from the taste issues, I am really starting to feel the fatigue of radiation poisoning begin to take effect. I'm not motivated to do much of anything... including update this blog. I want to read more, meditate, work out, catch up on the Terps, etc. but all I've really been able to rally for the past few days is the trip from my bed to my sofa. Thank God for satellite TV. I can't begin to imagine what I would do without it these days.

Besides the radiation effects, the biggest issue I am currently dealing with is the Erbitux rash. To look at me, you'd think that heaven had rained down some sort of terrible pox on me as though I were Pharoah himself holding captive the Israelites. I half expect to wake up tomorrow to find my house covered in frogs or locusts. It is that bad. I'm sure you're thinking that I'm a little paranoid but no... it is THAT bad. It covers not only my entire face including my lips and eyebrows but it is also covers my neck, chest and back. It's in my ears and covers my scalp. No one told me about the scalp. For some reason, that part itches terribly. The sores are generally puss filled like normal acne but unlike normal acne, they seem to die off much more quickly by oozing and ultimately drying out, only to be replaced by three more. What is most remarkable to me about this is that there is nothing gradual about it. It doesn't get worse by the day but, literally, by the hour. I tried to take some pictures to post but none of them do it justice so you'll just have to take my word for it for now. I promise to get some up soon. For fear of frightening small children, I have made the choice to confine myself to the house save for necessary trips for treatment and Mason's football games. It's only for a few more weeks (or so I keep telling myself.)

There is one experience from the week that I wanted to mention. The place where I get my radiation treatment also does PET scans. This week, I noticed a young woman, maybe late 30's or early 40's waiting in the reception area. I assumed she waited for an elderly parent but was suprised to see a young girl, no more than 17 or 18, come out to greet her with the telltale bandage on her arm and goody bag of snacks in her hand. This was her daughter. The mother was stoic and business-like as she instructed the nurse to make sure the results were sent to the right doctors. Clearly she had done this before, perhaps many times. She wanted to make sure that her daughter's new oncologist was consulted and not her pediatric oncologist. It struck me that there may be no two sadder words than pediatric oncologist. I am so thankful that this is happening to me and not my little boy...

One Week

2006-08-21T23:20:00.000-04:00

August 21, 2006 - One week down and all in all, I'm no worse for wear. It's late, I'm tired so here are a bunch of random thoughts:

The stomach issues are still intermittent but all in all, it's not that bad. Yet. This past Saturday was essentially a waste as I just laid around feeling 'blah' watching the Little League World Series and wondering how a 6'8" 250 pound 13 year old can rightly be considered a "Little" leaguer. At times I feel fine and at other times I just feel overly full like whatever I do eat just kind of sits there. Ginger ale helps some. Exercise seems to help too. I'm still doing 25 minutes of cardio each day as well as some light weights to try to maintain muscle mass.
Since I have to figure out a way to choke down 2500+ calories and 130 grams of protein each day, the whole foods diet is pretty much out, at least for the time being. There is just no way I can stomach that many fruits and vegetables. Between bouts of stomach upset, I've managed to indulge a few cravings which seem to be mostly richer, spicier foods.
At least I know the Erbitux is working. As of today, the acne rash is in full force. I'm amazed at how quickly and completely it has manifested itself. You can see the progression, literally, from hour to hour. I'll try to post a picture tomorrow but believe me when I tell you most tenth graders have a better complexion than I do right now. Hopefully, the drug is having a like effect on the cancer cells.
5 radiation treatments in the books and still no noticeable effects internally or externally. I know it's just a matter of time but I'm hoping that by choosing Tomotherapy, I've spared myself at least some of the horror that I've read about during and after treatments. Time will tell. From what I hear and read, week three is when it really starts to kick in. On an interesting side note, there has been one positive side effect from the radiation which is the scar of my primary incision is much less noticeable and almost completely flat.
Lingering effects from surgery - I'm still numb on the left side of my neck and around my left ear and ear lobe. The left half of my bottom lip still appears to be paralyzed and I'm beginning to wonder if it will ever get better. On a brighter note, the residual pain in my chest has all but completely disappeared and the range of motion in my neck is probably back to about 95%. The elasticity of the skin in the region is almost completely back to normal.
I'm really wondering if I made the right choice with Erbitux. Did I just take the easy way out because the effects of Cisplatin are so much harder? I've only got one shot at this so I need to throw everything at it including the kitchen sink. What if I'm not being aggressive enough?
I found a new site today called the Oral Cancer Foundation. For anyone in this unfortunate predicament, I recommend this site but do so with a word of caution. Yes, there is a wealth of valuable insight and information from people who have experienced this disease but it is also a stark reminder that very many people do, in fact, ultimately succumb to it. I guess I was hoping to see more stories of survivorship, 5, 10, 15 years out but unfortunately those stories are rare on this site. Most of the members are 1-3 years post treatment and that's a great start but it is also tempered with many people who are recurrent, even beyond that timeframe. Plus, it seemed to me that most of the people who cared to post their success stories were not as advanced as I am. I found myself a little depressed and even a little angry after reading through many of the posts but I will continue to visit this site because if nothing else, at least I'll have a better idea as to what I should expect in the coming weeks.
I'm really, REALLY afraid that I'm not going to be here for Mason as he grows up. Understand, I am not afraid to die as long as I can feel confident in knowing that my boy is old enough to understand, accept it and persevere. If someone told me that I had exactly 20 years to live from this moment but not a second more, I would take it in a heartbeat and not think twice about it.

Thats about all I have for now. I'm going to bed.

So It Begins

2006-08-17T22:18:00.000-04:00

August 17, 2006 - Today was day three of my radiation treatments. So far, I'm feeling no noticeable effects from the radiation but I have begun to feel the effects of the Erbitux. Actually, I don't think it's the Erbitux itself that has been bothering my but the steroid that is administered prior to the Erbitux... at least that's what Dr. Dar tells me anyway. It's probably some combination of both but it's to be expected, I guess. I started feeling it yesterday with a case of the hiccups that just wouldn't go away. Later, I began to feel a sense of indigestion at which point I called Dr. Dar to see if this was normal. He said it was and offered to call in a prescription which I declined. Then he recommended Prilosec OTC which, begrudgingly, I've begun to take. If you haven't figured it out by now, I do not like taking medicine. Not because I'm adverse to it but because I don't like the idea of so many foreign substances in my body. The Erbitux is bad enough. Anyway, the indigestion is a little better today although I have had a sort of uneasy feeling in my stomach most of the day. Not nausea per se, but a slight queasiness with an accompanying feeling of rocks in my stomach. To top it off, the steroid makes you restless so even though I was dead tired last night, I had trouble sleeping.

So back to radiation. I met with a oncological nutritionist after my treatment today to discuss diet planning and strategies to maintain proper nutrition if and when it becomes difficult for me to eat. Basically, I need to figure out a way to take in about 2500 calories and 120 grams of protein per day. That's a lot. Especially on an upset stomach. So, I'm going to have to augment the whole foods diet with some richer, fattier foods, especially while I can still eat comfortably. I will also have to add some protein and other supplements. We talked about the supplements I'm on now (the list of which has grown substantially) and she gave me some do's and dont's. This is a subject that I've been meaning to touch on and will in another post as it is very confusing to me. The good news... after tomorrow's treatment I'll be more than 10% done. Hopefully the stomach issues only last a couple of days at a time. For now, here are some pictures:

This is me on the bed, about to be scanned.

This is the TomoTherapy machine.

Here is a close up of the mask. You can see how tightly bolted down it really is. Now imagine laying like this for 30 minutes at a time!

Finally, the effects of the mask on the skin. It takes about 30-45 minutes for the "lizard" look to wear off.

One Down

2006-08-15T21:17:00.000-04:00

August 15, 2006 - 34 treatments left to go. All in all, I'm no worse for wear. After spending a few hours in the office this morning, I made the 20 or so minute drive to Fairfax for my 11:15am Tomotherapy appointment. I was a little late and Michelle had already arrived ahead of me. Our first meeting was with a social worker who was very nice and wanted to know how we were both coping, who our support was, etc.... After about 20 minutes with her, I was shown to the treatment room while Michelle stayed behind and continued to chat.

I was instructed to lay supine on the platform while my head was positioned properly on the headrest and my mask was fitted. I'm not going to lie, the mask sucks. It truly is uncomfortable, both physically and mentally, moreso than I remembered. Not only does it prevent you from moving your head laterally but it actually constricts your face so you can't really talk or even open your eyes completely. Since it is snapped down to the platform, there is quite a bit of downward pressure applied and the plastic is not very maliable at all. In fact, because it is plastic mesh, the meshing begins to dig into your skin after a few minutes. If you're at all claustrophobic or anxious, I would recommend a valium or something prior to the treatment.

Before the treatment began, the technician had to calibrate my position which is done to the millimeter. It is very precise. Unfortunately, this significantly adds to the time in the mask. During this time, I tried to control my anxiety by concentrating on my breathing. The trick is to focus all attention on the exact spot where air is inhaled and exhaled. Close your eyes and see that spot in your mind, as though you are looking at yourself. Not only does this help control your breathing and, in turn, your anxiety but it forces you to not think about the pain of the mask or whats going on around you.

Finally, the radiation began and I would have to say it didn't take any longer than 5-7 minutes. I kept as still as possible but after almost 30 minutes, that became exceedingly difficult. I couldn't see any radiation beams or where they might have been coming from for that matter but I did hear it. It was like a locomotive chugging in a halo around my head. CHUG chug, CHUG chug, CHUG chug, all the way around my head. I think I felt it also, which I will not even try to describe because I can't. It didn't hurt for what that's worth. When the mask was finally removed, the meshing left quite an imprint on my face and made me look like I had lizard skin. This should not be too much of an issue after the first few treatments since I probably won't be in the machine as long. I dressed and headed straight for my Erbitux treatment.

When I finally arrived at Dr. Dar's office (15 minutes late) for my 1:30 Erbitux appointment, I was still feeling no effects from the radiation. So far so good. The Erbitux injection takes a long time. I was shown to a long room with one wall full of windows overlooking the grounds outside. There was a series of reclining chairs, each with a I.V. infusion machine next to it. Two of the chairs were occupied by miserable looking yet good-natured people. They were both quite elderly and just like at the PET scan, I felt very out of place. A nurse explained the possible short and long term effects of the drug before inserting my I.V. line. They worry about allergic reactions since I'm a first timer so before they start the Erbitux, I'm given a steroid as well as Benadryl. What I wasn't told was that the Benadryl would make me drowsy and after about 15 minutes, I felt completely stoned. Finally, they loaded the Erbitux which was a two hour infusion since it contained both a normal dose and a loading dose. All in all, I was there for about three hours. One interesting thing to note was the conversation I had with Dr. Dar's benefits coordinator before I went in for the treatment. She explained what was going to be billed to my insurance company and the cost of the Erbitux... $9000.... PER TREATMENT! I certainly hope my insurance company doesn't try to bill me for any of this.

By the time I was ready to leave, my buzz had worn off and I was still feeling pretty good. Maybe a little residual drowsiness but I didn't have time for that. I had to pick Mason up from school and get him to football practice by 6:00pm so I could watch him get consistently outrun and overrun by kids twice his size. If he's going to play for Ralph Friedgen in 15 years, he's going to have to work on that a little.

So now, I still feel good. I was able to work out tonight and eat a big dinner. I asked the radiation techs and the social worker how long it would be before I really start to feel bad and they both said probably 3-4 weeks but hopefully not until the 5th or 6th week. I am apparently only the third person to be treated with this Tomotherapy machine and the first is still undergoing treatments so they don't know what type of improvements this machine will have on side effects although they all believe it will be very positive. I'll take some pictures tomorrow of the mask and the procedure and include them in my next post.

T Minus 24 Hours

2006-08-14T21:07:00.000-04:00

August 14, 2006 - The day has finally arrived, I start my treatments tomorrow. By the way, I'm sorry for not posting sooner but I really haven't had much to say and I've been very busy at home and at work trying to prepare as much as possible for what I expect will be some type of leave of absence.

People have asked me today if I'm nervous or scared. The truth is that I'm not scared of the treatments themselves. I've resolved myself to the fact that I'm going to feel pretty miserable eventually, it's just a matter of how long it will be before I get to that point. Maybe three or four weeks. Maybe tomorrow. Who knows? What does scare me is the thought that the treatments wont work. I have dreams of going in for PET scans only to find tumors throughout my body. I know that I need to stay positive and expect the best possible outcome but the thought of having to endure radiation and immunotherapy only to find out that I still have cancer is very real and I'm not sure how to reconcile these two opposing perspectives. Does this fear mean that I'm really not being positive? Am I sabotaging my treatments with worry? Great, now I'm worried about that! The truth of the matter is that I am anxious to get started because after tomorrow, I'm one day closer to being finished.

I spent my day by keeping my mind busy at work. My co-workers surprised me with a nice lunch of healthy foods that they all ate for my sake. I could have easily broken down in front of them all had I let myself but I was able to keep it together, thankfully. To know that the people around you care and are willing to show their support in such a way is so helpful. I was really quite touched by the gesture. Tonight, I decided to treat myself to one last guilty meal before I lost my sense of taste so we ordered my favorite... pepperoni pizza with extra cheese and extra sauce. I even drank a coke with it and I'm not talking about the diet stuff. I'm talking the real-deal-super-sugarfied Coca Cola Classic... red, white and you! I've never taken drugs but I did see Trainspotting and I can only imagine that my dining experience tonight was something akin to sticking a spike full of heroin in my arm. In other words, after 8 full weeks without sugar, caffeine, and eating nothing but whole foods, pizza and coke were damn good.

I'm not sure what else to say right now. Scared? Yes. Anxious? Yes. Excited? Yes. Very full? Yes. I think that about covers it for now. I'll have an update tomorrow to let you know how it went.

Waiting

2006-08-08T16:22:00.000-04:00

August 8, 2006 - So now I wait. Everything has been finalized, my radiation schedule, my chemo decision (I've decided to go with Erbitux), and my doctors. But I'm one week away from getting started and I'm very anxious. I'll use this week to do some much needed catch-up at work but I can't help but feel I'm wasting valuable time.

Waiting makes you paranoid. It makes you notice things that aren't there and magnifies the things that are. A little pain in my side becomes kidney cancer and an ache in my leg means it has spread to the bone. I wonder about the dynamics of cancer. How long does it take to spread? Where would it go first? Since both infected lymph nodes in my were removed, would it spread to the remaining nodes in that area first or does it get to jump straight to other parts of my body now that it has already completed that step? These are the rambling thoughts of an unoccupied mind.

Since it's been about three weeks since my surgery, I guess this would be a good time to update everyone on how I'm feeling. All in all, I feel good. I'm eating more (although I can't seem to gain any weight since switching to this whole foods diet) and I started working out again. The pain from the surgery has subsided and what remains is tolerable though at times, annoying. The skin on the left side of my chest and along my left jawline is very sensitive and almost feels as though it's been badly sunburned. I attribute this to being stretched as a result of the incision but that is purely a guess. Anything touching it like my shirt, a seatbelt, etc... is uncomfortable. Swallowing is still a bit uncomfortable as well but not because of the sore throat. That's gone. Now it's the muscles around my throat that control swallowing that I feel. But it's not bad. Despite a little residual stiffness, I've regained full range of motion in my neck.

The area around both incisions extending up to and including my left ear and down to my left shoulder is still quite numb. It's really a strange sensation to not be able to feel something touching you although every now and then I will feel a tickle in this area as though a spider were crawling on me or a quick shooting pain that feel like a surge of electricity. I suspect this is part of the healing process.

The incisions themselves look quite good which is a testament to both the skill of my surgeon and my ability to heal quickly. I've been applying copious amounts of vitamin E lotion to the area to improve the elasticity around the incisions and reduce the raised scar tissue. I'm sure I'll always have a scar and that's ok. I want it. Every time I look in the mirror it will serve as a reminder to live life the right way. Plus, I'm sure it will pale in comparison to the psychological scar that cancer leaves.

The Mask

2006-08-07T00:12:00.000-04:00

August 3, 2006 - Today I went in for my preliminary CT scan prior to radiation treatments and to be fitted for my mask. In case you're not aware, radiation to the head / neck requires the use of a mask to immobilize the person receiving treatment and ensure that the proper area is treated.

The waiting room of the radiology center at Inova Fairfax Hospital is memorable for one thing. They have A LOT of puzzles. These are big puzzles too, 1000 and 5000 pieces. Do people really do puzzles while they are waiting here? Does anyone possibly have to wait THAT long? Not to mention, there was no discernable place to actually do a puzzle except on the floor and it would seem rather awkward for me to think about grown adults sitting on the floor in public doing a puzzle. Maybe that's just me.

After a brief wait, a radiology technician showed me to the lab where I was instructed to lay on the bed for a CT scan. I knew the drill. This time, there was no injection of contrasting fluid so it was pretty straightforward. This initial CT is to give the doctor a baseline of the anatomy of the tumor which they will measure as it changes (hopefully gets smaller) as treatments progress. Before the CT began, the technician applied a piece of mesh plastic (similar to plastic chicken wire) to my head and began to mold it to the contours of my face. The plastic is hot when they apply it. Very hot in fact. It hardens as it cools. The plastic has a hard border that is clamped down to the CT bed ensuring that I cannot move my head at all. This is awkward and I'm sure for many a very uncomfortable feeling. If you have panic or anxiety disorders or are at all claustrophobic, I'd recommend taking a Valium before this process. It takes about 10 minutes for the mask to harden which I'm sure must seem like an eternity to anyone who gets freaked by this sort of thing.

Fortunately, I have no such problems although I have to admit that even my heart sped up a little. I used some controlled breathing techniques to calm myself. The ceiling tiles are all bare white except for one directly above the CT bed which had a picture of a single tree in a meadow with a bright blue sky and soft billowing clouds behind it. I guess this is meant to relax people? Without my glasses on, I could barely see it anyway so alot of good it did!

After about 5 minutes in the machine, the technician used tape to mark certain areas on the mask, presumably targets for radiation. Once this was done, I was free to leave. This trip was relatively quick and painless.

As I left the technician informed me that I was scheduled to start treatments on 8/15. So now I know when my treatments will begin and end and I have my team assembled. All tolled, I will have had 6 doctors actively participate in my treatment and will have consulted with 4 others. Add to this the many admnistrators, nurses and other medical staff who have cared for me through two hospital visits and countless other appointments. There are so many people in this world who barely have access to any medical services at all. I am very blessed to have so many resources available to me.

Decisions

2006-08-06T22:51:00.000-04:00

August 2, 2006 - I met with Dr. Ajay Dar today who is a Medical Oncologist to talk about adjuvant treatments while I undergo radiation. I was anxious to discuss the risk / benefits of the two drugs that Dr. Tonnesen discussed with me which are the traditional chemo drug cisplatin and the newer immunotherapy drug Erbitux.

In general terms, I'm very leary of chemotherapy. Not because of the short term effects; I can handle those. My concern is with the systemic toxicity of chemotherapy and the potential long term effects including damage to the liver, kidneys, heart and immune system, not to mention linkage to secondary cancers. I know radiation has some of these same risks but I don't have much of a choice there and anyway, radiation to the head and neck probably isn't quite as risky as radiation to say, the abdomen. All of the reading that I've been doing hasn't changed my opinion of chemo and, in fact, it has strengthened it.

So, I'm already leaning towards Erbitux. Not that this drug doesn't have its share of side effects and risks, the biggest one being that it's so new we really don't know what the long term effects on my body might be. But I'm willing to take that chance for the sake of a cure to my more immediate problem. Dr. Dar put me at ease by explaining that today, both treatments are considered 'standard of care' meaning they are both FDA approved and, theoretically at least, should show equal or similar effectiveness. He gave me some literature on Erbitux which showed it to be very promising for my type of cancer. Unfortunately, there is no side by side data to show the effectiveness of Erbitux vs. cisplatin. There have been no studies to measure them against each other. There was apparently one study that used cisplatin and Erbitux together but this apparently turned out very badly. It seems that together the drugs caused all kinds of heart conditions and death so the study was terminated early.

I have a few days to decide and I'll use this time to meditate on it so hopefully the answer becomes clearer however I think I already know what I'm going to do. Both drugs are administered intraveneously and would take about 1/2 day to complete although the Erbitux is given once per week during radiation treatments while the cisplatin is only given three times.

At the end of the appointment, I had to give some blood so they can test my blood counts, liver and kidney functions. Dr. Dar asked me to call him as soon as I knew when my radiation treatments would start so we could schedule my next visit.

A Special Message

2006-08-02T22:51:00.000-04:00

August 2, 2006 - I got a call completely out of the blue today from Dr. Au. He just wanted to wish me good luck with my radiation treatments and asked me to stop by once in a while to stay in touch.

A bit of explanation is in order given my last post.

On Monday, 7/31/06, I met with Dr. Glenn Tonnesen whom I was referred to by Dr. Califano. He is a well reknowned Radiation Oncologist in Fairfax and as I mentioned earlier, Dr. Au actually suggested that I keep my appointment with him to see what he had to say about a new treatment that his center is using called Tomotherapy. I went into the appointment thinking that I was just going to learn about this new technology but that it would not sway me from decision to use Dr. Au given how comfortable I was made to feel during my visit with him.

Dr. Tonnesen is warm, personable and honest. He explained in detail the side effects that I can expect from the radiation treatments both now and in the future. He made an offhanded comment that I'm sure meant nothing to him but everything to me. As he described the potential lasting effects of the treatment, he said "you'll look back and remember me when you're an old man!" His point, jokingly, was that I would curse him when I'm older but for me it was validation that I will, in fact, live to be an old man. We also talked about my options for adjuvant chemotherapy treatment. Dr. Tonnesen is the first person to tell me that a traditional chemo drug called cisplatin is the current standard of care and something that I should strongly consider. To date, every doctor that I've spoken with has focused on a new drug called Erbitux which was just recently approved by the FDA as a treatment for head and neck cancers. It is not a cytotoxic chemo drug but instead is considered to be an immunotherapy drug that attacks cancer cells in a different way. While it has certain side effects, it does not cause the traditional chemo side effects of nausea and hair loss. Although the potential for this new drug is great and early studies show that it is quite effective in combination with radiation therapy, the risk is that there is not two years worth of data yet to prove its effectiveness over the long term like there is with cisplatin. Having said all that, Dr. Tonnesen then told me (quite uncharateristically for a doctor I might add) that if he were in my shoes, he would choose Erbitux. I will be meeting with a Medical Oncologist this week to discuss these options.

I left the appointment sufficiently convinced of two things; 1. That the Tomotherapy technology was definitely worth strong consideration despite the fact that it would mean travelling much further for my daily treatments, and 2. That I could easily work with Dr. Tonnesen. I now had a big decision to make and I needed some help in making it.

The next day, I emailed my friend Eden who works at Johns Hopkins to ask some of her doctor friends if they have any recommendations. She in turn forwarded my question to several radiation oncologists there as well as a head and neck specialist. Some knew Dr. Tonnesen and recommended him based on that but it was clear that they felt the additional daily drive was worth it for the Tomotherapy machine. Here is the difference as I understand it: Dr. Au uses what is still a relatively new technology in its own right called IMRT (Intensity-Modulated Radiotherapy) which is an iteration of an older technology called 3-Dimensional Conformal Radiotherapy or 3DCRT. The primary benefit of IMRT is that it allows for greater precision in targeting a tumor by shaping the profile of the radiation beam and varying the intensity of the beam over a given area. This is particularly helpful for concave tumor surfaces or tumors that are wrapped around vital organs. The drawback is that it is very labor and computing resource intensive and thus, is very costly. Tomotherapy is a specialized form of IMRT that adds greater accuracy to that precision by incorporating a CT scan before every treatment. Tumors move. Patients aren't always positioned in exactly the same way. Even minute changes in position can lead to unintended damage to healthy tissue which Tomotherapy seeks to avoid. Not surprisingly, I too seek to avoid damaging my healthy tissue. A very good description of the origin and benefits of Tomotherapy can be found here. (As an aside, I'm glad I didn't read this article before choosing Tomotherapy because it focuses on St. Agnes Hospital in Baltimore. I've had very bad experiences there. Among other things, my mother was treated for lung cancer there and I do not believe she received very good care. My step-father calls it a place where people go to die.)

So, after praying on this decision, I finally came to the conclusion that the Tomotherapy was the right choice, despite the fact that I would not be working with Dr. Au and that it was not nearly as convenient in terms of location. My insurance may not cover it either. But the stakes don't get any higher so this is no time to quibble over money or temporary inconvenience. I want the best technology available. I informed Dr. Au's office of my choice.

When he called me, I explained to him my reasons and expressed my gratitude that he would take the time to contact me and wish me well. I also told him that the decision was not easy and that him calling me just reinforced that. Dr. Kin-Sing Au is a caregiver of the highest order and I am sorry that he is not going to be administering my treatments. After we hung up, he called back a couple minutes later and told me that I made the right choice and that the Tomotherapy machine was a better technology. He said that if I were his brother-in-law, he would probably refer me to Dr. Tonnesen as well. I was stunned and quite literally didn't know what to say.

I now have one major decision left which I am agonizing over... chemotherapy or immunotherapy.

Best.Visit.Ever.

2006-08-01T00:04:00.000-04:00

July 28, 2006 - Today I had my first appointment with a Radiation Oncologist, Dr. Kin-Sing Au at INOVA Loudoun County Hospital. This was, quite simply, the best Dr. visit I've had since this process started. From the moment I arrived, I knew this practice was going to be different from anything I had experienced so far. The space was warm and inviting. There was a sense of peace and calming in the way the office was appointed. Even the information requested of me indicated that these people were interested in me as more than just a clinical patient but as a person. I was made to feel very much at ease by everyone that I met with.

Dr. Au spoke to me at length regarding my treatment options and my prognosis which he considers to be very favorable. I asked him prepared questions and Michelle took notes. He took the time to discuss every question I had in detail. Much of what we discussed centered around the probable side effects of head and neck radiation which would be administered over a seven week period. Most likely, I will lose my sense of taste and my ability to produce saliva, particularly from my left salivary glands but both of these functions should return over time, at least in part. Ultimately, the lack of saliva and discomfort in my mouth and throat, which will get progressively worse over time, may inhibit my ability to take food orally in which case I would have to have a feeding port inserted into my stomach. None of this comes as a surprise. Over the past week, I've been fortunate enough to speak with two people who have undergone this very treatment for squamous cell carcinoma.

One is a man named Scott who was referred to me by an old friend of mine whom I've had the good fortune of reuniting with through this experience. Scott is a rather fascinating man. A career Marine, he served in Vietnam with my friend's father and lived through a number of harrowing experiences. Given his background and training, he went into his cancer treatments with a bravado that ultimately betrayed him. The treatments were much worse than he expected and in the middle of his treatments, he had to have a feeding tube inserted. Unfortunately, this was done while he was taking chemotherapy and because his immune system had been comprimised, he ended up with a terrible infection that literally almost killed him. All in all, he lost 70 pounds! But, it's now more than two years later and he is cancer free and enjoying retirement. Scott is just now regaining his sense of taste and his ability to enjoy the foods he once loved.

Back to Dr. Au. At the end of the consultation, Dr. Au personally showed me around the office including the treatment areas. He talked to me about the alternative therapies that they offer such as visualization therapies and Reiki. He then took me upstairs to introduce me to one of the Medical Oncologists in his building whom he works with extensively. When we returned to his office, one of Dr. Au's assistants made an appointment on my behalf with the Medical Oncologist so I can discuss potentially adding either chemotherapy or immunotherapy as an adjuvant to my radiation treatment.

All in all, the visit with Dr. Au left me feeling very good. I was especially pleased that he didn't balk at my questions regarding the use of nutritional supplements. This is something I am very confused about and will comment on in a later post. I think that because these people deal only with cancer patients, they are more in tune with our emotional and psychological needs as opposed to just our physical needs. Dr. Au suggested that I keep an appointment that I had already made for next week with another Radiation Oncologist because this other doctor is using a brand new technology and he would like to me hear about it. More on that later.

Alternative Therapies

2006-07-27T15:30:00.000-04:00

July 27, 2006 - The last few days have been pretty uneventful as I've been healing from my surgery. Right now, I'm still a little stiff and sore but I'm feeling 100 times better than I was just a few days ago. At the very least, I can eat like a normal person again.

Yesterday I visited a clinic in Washington, DC called the National Integrated Health Associates that specializes in Alternative and Complimentary Medicine and Therapies for cancer treatment. I understand that to truly beat cancer, I need to address the underlying issues that caused my cancer in the first place. Since I can't point to any of the typical carcinogens like tobacco and alcohol as the cause for my condition, there must be something below the surface that created a suitable environment within my body for cancer to take hold. The NIHA helps people examine things like diet, stress, spirituality and other physical conditions that may affect the immune system to find answers as to why we get cancer in the first place and, more importantly, how we can help eliminate it and prevent it from coming back. Certainly these types of practices are wrought with red flags but I'm keeping an open mind.

I met with Dr. Paul Beals whose profile states he is a Board Certified Family Practitioner and Clinical Nutritionist having earned his medical degree at Temple. Based on the research that I did, I believe his Board Certification expired in 2005 and has not yet been renewed but I'm not sure and it probably doesn't matter anyway. I didn't turn up any negative information about him and I do know that he has taught classes in alternative medicines and therapies at Georgetown Medical School for several years so all in all, I don't think this guy is a complete quack.

Dr. Beals has some pretty strong opinions regarding traditional cancer therapies and the medical industry in general which seemed to border on conspiratorial. After a brief exam, he zeroed in on a few issues including the fact that I have a couple of metal fillings in my mouth as well as a root canal. I would have never guessed that a root canal could be so problematic but it apparently invites bacteria and infection and chronic infection can lead to cancer. He recommended that at some point, I have this replaced by a bridge. He also recommended that I be tested for heavy metal toxicity, consult with a staff nutritionist, begin a regimin of I.V. mega-doses of vitamins and begin taking a pro-biotic formula to correct what he suspects are bacterial imbalances in my gastro-intestinal tract. Additionally, he referred me to a website to purchase something called "paw paw". I know what you're thinking.

The I.V. vitamins aren't happening. Besides the fact that it would require a drive to DC every week and 1.5 hours in his office, I'm just not convinced that megadose vitamins help or, more importantly, aren't toxic in their own right. I'm taking extra supplements on my own which I will continue to do. I will consult with a nutritionist because I think that's smart anyway and I did agree to be tested for heavy metal toxicity.

The metal toxicity test is two-fold and uses blood and hair. The technician who took my blood asked me if I was scared of needles and I had to laugh. If she only knew how many times I've been stuck over the past 6 weeks! Once my blood was drawn, she attempted to take a hair sample. Now, I recently shaved my head and even though it has grown out a little, my hair is still way too short to give the inch that they needed for a succesful test. At first, she suggested I wait a few weeks and come back. I asked if they could use any other hair, suggesting my legs. As it turns out, they can use one other type of hair and I'm sure you can imagine which type.

So, if you has asked me yesterday morning what my day was going to consist of, I promise you that standing in a strange bathroom using a pair of scissors in the manner in which I was using them would not have been one of my answers. I sure hope this works!

Post-Op

2006-07-23T15:50:00.000-04:00

So, this is me immediately following surgery. Trust me, I look ALOT better than I feel in this picture. I won't bore you with details of my night in the hospital because it was fairly uneventful and, frankly, I don't remember a good bit of it. I do remember waking up feeling slightly nauseated from the anesthesia with the worst sore throat I believe I've ever had. After what I imagine was a couple of hours in post-op recovery, I was taken to a room. The rooms at Hopkins are very comfortable, not unlike dorm rooms at some colleges, and are all private with amenities such as Internet connectivity (you have to supply the laptop and Ethernet cable since wireless is not available.) Oddly, the televisions only work on a pay-by-the-day basis. Despite being relatively nicely appointed though, it was still a hospital room which means someone was still coming in to wake me up for something every two hours.

Michelle insisted on staying the night with me despite my earlier protests. God bless her, she probably got less sleep than I did.

Entirely too early the following morning, a team of 5 or 6 doctors, not including Dr. Califano, came in for their rounds. They noted my condition, asked me a few questions and then off they went. One of the doctors did stay to ask my consent for a blood test to determine if I had something called Fanconi's Anemia. I won't get into the details of what this is but it's not good. You can find the Wiki definition HERE. This doctor then proceeded to tell me that I shouldn't worry because it's so highly unlikely that I have this disease that he didn't even want to tell me what it is. Of course I insisted, however, and he came back with a printout description of it. The blood test takes about 5 days so I should know by the time I go back to Dr. Califano for my follow up next week.

It is now Saturday, July 22, 2006 - 72 hours since my surgery. I generally feel like I've been hit by a bus but I think that is partly due to me trying to overdo it a bit today. My throat still feels like everything I swallow has been wrapped in razor wire and doused with habenero sauce. But I'm still here so things could be worse.

Here is a picture of my incisions (yes, there are two. The one on top goes behind my left ear up to my scalp.) :

Besides the incisions, I have two drainage tubes inserted into my chest for the drainage of blood and lymph fluid. The tubes are connected at the bottom to two rubber recepticals which must be emptied every four hours or so. I have to measure the fluid collected from each tube before emptying them and record the amounts in a journal. Once the amount collected over a 24 hour period falls below approximately 30ml, I can have the tubes removed. This usually takes a few days at least. Here is a picture of the tubes:

My son, who is really into Star Wars right now, asked me if I was going to be Darth Vader. I think he was a little freaked out by my appearance.

Other effects from surgery - I have considerable numbness on the left side of my head and neck and my left shoulder. I can't feel my left ear. There is some weakness in my left shoulder but it's not bad. I am, however, experiencing some minor paralysis in the left half of my lower lip. If I try to show my bottom teeth, I can only lower the right side of my lip so I look kind of like Rocky Balboa. It doesn't really bother me except that it has gotten in the way while eating and I think it has slightly affected my speech. Hopefully, this is only temporary.

By all accounts, the surgery went well. Dr. Califano spoke to Michelle as soon as it was over and was very optimistic. They were able to confirm that the spot on the back of my tongue was the originating tumor site and because it was so small, he commented that he could have very well gotten the whole thing just from the biopsy.

My next appointment with Dr. Califano is on Monday to have the drainage tubes removed and go over the results of the surgery. At this point, I'm feeling good. Stiff and sore, but good.

Hazel

2006-07-23T15:25:00.000-04:00

July 19, 2006 - Things have moved very fast to this point. Just a few weeks ago, I had no idea I was even sick and now I'm about to undergo the most extensive surgery of my life. When you have jobs and a kid, there's alot of logistics required for an overnight hospital stay. We went through 3 or 4 basic plans before finally deciding to leave Mason with my grandmother overnight. This is my grandmother we're talking about, not Mason's. So we're talking about leaving a 5 year old who runs 100 miles a minute from morning til night with an 84 year old woman. As you can imagine, I'm not feeling 100% good about this but all things considered, it made the most sense.

Michelle and I arrived at the Sidney Kimmel Comprehensive Cancer Center about 15 minutes late for our 9:45am appointment. Now, I don't wish the need for cancer surgery on anyone but if you or someone you care about ever has to go through this, I highly recommend Johns Hopkins if you can make it to Baltimore. This is one of the premier institutions in the world for cancer care and research and it is completely patient and family focused. We were made to feel very comfortable from the moment we arrived. There were no forms to complete, no documents to sign and we hardly had to wait before being greeted by a doctor. I was glad to see that my dad was already there which was an unexpected surprise.

A young doctor who worked for Dr. Califano came out and presented me with information on two clinical studies for which I qualify. They are part of an effort to develop early detection tests for cancer. I signed the consent forms without really reading them because I figured if it was going to help them help someone else, I was willing to do it. Soon after, I was called into the pre-op area where I would spend approximately 45 minutes getting prepped before my family could come in and join me. Here is a picture of me in the pre-op area right before surgery.

This is where I met Hazel. Hazel was one of the nurses who attended to me, drawing blood and administering my IV line. She radiated compassion, but in a commanding way which made it clear that you better not step out of line and that went for doctors and patients alike. This was her world and she was in control. I asked Hazel how long she had been doing this and she replied, "Honey, longer than you've been on God's good earth." It occured to me that the world has changed quite a bit in the time that I've been on God's good earth and in that time, I am quite sure Hazel had suffered more than her share of indignities and prejudices at the hands of the very people she was tasked with caring for. Unfortunately, many cancer patients are older, often alone and angry. I can well imagine that their reaction to Hazel would be shaped by the intolerant world in which they lived. I know this because there was a time in my life when I could rightly be accused of intolerance myself.

Yet here she was. After all these years, Hazel was still providing care for cancer patients. As she taped up my IV line, she drew a little picture on the tape which I eventually realized was a face with a halo above it. Hazel asked me if I knew who this was and for some reason, I thought she was going to say my mother although she could not have known that my mother had passed away three years ago. She pulled a small photo with a prayer written on it from her lapel pocket and told me that it was someone she carried with her at all times... her guardian angel. She then held my hand and just sat with me for a minute or two. You see, even though we had only really made small talk, Hazel knew that I was scared and anxious. Her small gesture, while silly and cute was to me very profound and I felt peace at that moment prior to going in for surgery.

If doctors provide science to medicine, nurses like Hazel surely provide the art.

Sharon Frado Rocks

2006-07-21T15:10:00.000-04:00

Monday, July 17, 2006 - I was planning to call Sharon, the woman who handles Dr. Califano's schedule as soon as I got to work. However, as I was walking out the door, the phone rang. It was Sharon. She told me that she understood I wanted to get on Dr. Califano's surgical schedule and that she was calling to set this up. I was stunned. I saw this as another sign that Dr. Califano was meant to be my surgeon.

The first day that she mentioned was Friday, as in, Friday of that week. I was stunned once again that I could get on his schedule so quickly. Oops, she corrected herself as she remembered that Dr. Califano was seeing patients that Friday and not doing surgery. Fully expecting something the following week, she then mentioned Wednesday as in, the day after tomorrow. Wow. Not only would I be getting Dr. Califano for my surgery but I would only be losing one day based on what I already had scheduled!

As it turns out, getting on the schedule was the easy part. Now I had to scramble to get my pre-operative physical and blood work completed by my primary care physician. I had just gone to do this the previous Thursday in preparation for my surgery with Dr. Gurian. I knew I could have those records faxed up to Hopkins but the problem was Hopkins required certain tests that I didn't have done. The triage nurse at my PCP office was great. I explained the situation to her and she took me in without an appointment and drew the blood needed for the two tests I hadn't yet had done. However, she could not promise that they would have the results in time for my surgery on Wednesday. I could only pray that they would come back quickly but for some reason I felt that this was meant to be so I had faith that it would all work out.

Besides the blood test, I also had to come up with the original pathology slides from my initial biopsy. After calling everywhere I could think of to find these things, I finally was able to track down the Histology lab at Reston Hospital where they were kept. I was in luck. They maintain three sets of slides, two of which they has sent to the AFIP to verify the pathology which meant that they still had one set and they were willing to "loan" them to me. Sharon told me they needed these slides right away so I was ready to drive them up to Hopkins myself but it turned out that I could bring them with me at the time of my surgery. Everything was falling into place. I just had to call Dr. Gurian's office to cancel that surgery. I hoped they weren't going to be mad that I was cancelling the day before.

Dr. Califano

2006-07-21T14:26:00.000-04:00

July 14, 2006 - I was feeling pretty down from my meeting with Dr. Davidson and I wondered if it even made sense to visit anyone else. My friend Eden, who has been a Godsend, BTW, works at Hopkins and she said something which made a lot of sense. She told me that the reason the visit with Dr. Davidson went so poorly was so I would be compelled to see someone else, in this case Dr. Joseph Califano, because he was meant to do my surgery. It's God's will, I just needed to be able to recognize it.

The night before my appointment, I stayed with my friend Keith who lives fairly close to Johns Hopkins. I didn't want to have to drive all the way up there from Virginia that morning because anyone who knows Washington DC traffic knows that it's some of the worst traffic on the planet. I arrived early for my 8:45am appt. and waited only a few minutes before being called into Dr. Califano's office. Eden was nice enough to meet me there since she works in the same building and wait with me until I was called.

My initial reaction upon seeing Dr. Califano was that he was much younger than I expected. In fact, I don't mind telling you that he looked more like a soap opera doctor than a Harvard Medical School grad. I immediately thanked him for seeing me on such short notice and he quite honestly responded that I should thank his scheduler because she talked him into it. I'll have to remember to do that.

Dr. Califano's exam was shorter than those of the other doctors I had seen. He did reach down my throat to the spot on my tongue that was thought to be the primary tumor site and pressed on it pretty hard. He said it felt hard like a tumor and upon further examination commented that he was able to make it bleed which was a telltale sign that this was the spot we were looking for. This was encouraging.

Right away, I knew this visit was going to be very different than my last. Dr. Califano was energetic, enthusiastic and very positive. The ironic thing is he didn't really tell me anything different than the last doctor I saw, but the delivery was much better. I asked him what his thoughts were on my prognosis and he replied "very good." He told me that if I were to look on the Internet which he was sure I had already done, the statistics I would find for stage 4 disease of this type are morbid and not at all encouraging. However, he reminded me that these take into account the entire universe of people with stage 4 disease, most of which have one or more "co-morbidity" factors such as smoking, drinking, or other health problems that contribute to their poor prognosis. He was able to quote some more encouraging statistics for people like me who are otherwise very healthy which I appreciated. He also said that more than likely the cause of this was viral in nature which would further improve my prognosis. I asked him very bluntly if this was beatable and he replied with a very enthusiatic "Sure, of course it is" with a "don't be silly" tilt to his head.

The meeting didn't last that long but I knew as I was leaving that I needed Dr. Califano on my team. Unfortunately, Sharon, the woman who does his scheduling, doesn't work on Fridays so I didn't know how long it would take to get on his surgical schedule. I would have to call her the following Monday to schedule something. This was going to be tricky because I had already scheduled surgery with Dr. Gurian for the following Tuesday, 7/18. I told myself that if I could get on Dr. Califano's schedule within two weeks of the surgery I already had scheduled, I would cancel with Dr. Gurian but I would be doing that with only one day's notice.

Doctors, Doctors and More Doctors

2006-07-18T23:14:00.000-04:00

Sorry this has gotten a little behind. Actually, quite a bit has happened over the last week and a half so I'll try to condense it here.

Dr. Hermansen had scheduled an appt. for me with one of her partners, Dr. Josef Gurian, for Friday, July 7. Part of the reason for the referral was for a second opinion although I'm not sure how viable a second opinion is within the same practice. The other reason for the referral was because if I were to have follow up neck surgery to remove what was left, he would be the one to do it.

Dr. Gurian immediately presented himself as a kind and empathetic man with a friendly smile that seemed to tilt a little to one side. He spent a considerable amount of time with Michelle and me answering all of our questions. He told me that he and his partners had been reviewing my case and debating the merits of having surgery first or radiation and chemo first, possibly eliminating the need for surgery. I responded that I want this thing out of me as soon as possible and I insisted on surgery first... and fast. I also asked him about seeing an oncologist because while he was a specialist in head and neck surgery, he was not an oncologist. He then referred me to one of his friends and colleagues, Dr. Bruce Davidson who is the ENT Oncology Chair at Georgetown University Hospital. In fact, he made the call to Dr. Davidson himself and had me sit in his office, on HIS phone to make the appointment which was scheduled for the following Wednesday, July 12. Things were moving fast.

I arrived at Dr. Davidson's office early on Wednesday. Walking through the parking lot, I noticed a ten dollar bill that someone had dropped on the ground. As I picked it up, an elderly couple was pulling into the parking lot next to me and they commented on my good fortune. It occured to me that I should give them the money which, despite their protests, I insisted on doing. "Pay for your parking," I said. Finally, they took it and I went into the building feeling like karma was on my side.

Karma decided not to follow me into the office.

After checking in, I was first examined by one of Dr. Davidson's students. Maybe he wasn't a student but an intern. I don't know. I've never understood the difference between an intern or a resident or a fellow. They've got so many designations. But whatever you call him, I was amazed that this kid was a doctor. He looked no more than 19 and I'm not that old. I don't remember his name so we'll call him Doogie Howser. Doogie completed a somewhat uncomfortable exam of my mouth and throat and proceeded to tell me that Dr. Davidson would be coming in to do the very same exam. What struck me about Doogie besides his pre-pubescent appearance was the fact that he seemed to look at me with a mixture of pity and pure clinical detachment. He certainly didn't look at me as a human being.

When I finally saw Dr. Davidson, it didn't get any better. I had left the exam room to use the rest room for a minute, and when I returned, there he was with Doogie and another young woman, I assume also a student/intern/resident who didn't say a word the entire time. I understand this is a teaching hospital but it's a little disconcerting to walk into a tiny exam room with three very serious looking people waiting for you. As Dr. Davidson conducted his exam, which included him reaching all the way down my throat to press on the back of my tongue as well as seemingly trying to impale my tonsils with his fingers, both Doogie and the mute would lean to one side in unison, carefully noting every detail.

Don't get me wrong. Dr. Davidson is a nice enough guy but truth be told, the bedside manner is a little lacking if you ask me. Once his exam was completed, we discussed my treatment options and he confirmed what I already knew. I then asked him his opinion of my prognosis. Now, I asked this same question of Dr. Gurian and he did not want to talk in terms of "cure" for some reason but he did at least say my chances overall were good and that he was optimistic. No such words of encouragement from Dr. Davidson. In fact, I couldn't decipher much of an answer at all in his response which led me to believe it was a purposeful "non" answer. He was then kind enough to share with me that the staging information from my PET scan was wrong and that what I really had was stage 4 cancer since more than one lymph node is involved and by strict definition, that is stage 4 disease. Great. Thanks for the heads up on that.

I could go on but at this point, I just wanted out of there. We wrapped the meeting and I headed home. I had yet another appointment scheduled the following Friday with yet another ENT oncologist, this time at Johns Hopkins. I left this meeting feeling so depressed that I wasn't sure I wanted to see anyone else. I'm glad now that I did.

Thank You

2006-07-18T18:22:00.000-04:00

Well, the word is out, I guess. I've gotten alot of emails and calls from people over the past couple of days in response to this blog. Many of them complete strangers. Some people have shared their own experiences with cancer, others have just offered words of care and encouragement. I just want to say thank you to everyone who has taken the time to call or write. It means more to me than you can know.

I've been thinking that 10 years from now, I would look back on this experience as being the greatest thing that's ever happened to me. That may very well be the case but the reality is I don't know if I have 10 years. The good news is, I've realized from this outpouring of goodwill that I don't need to wait 10 years to see this experience as a blessing. Yesterday, I had lunch with a friend whom I had lost touch with years ago. Today, I received an email from another old friend whom I had always regretted leaving on bad terms. Cancer has allowed me the opportunity to reconnect with these and others.

But it's not just old friends checking in. Like I said, many people whom I have never met have offered me their well wishes. I'm really amazed at the beauty of humanity. The truth is, before this happened, I was not a particularly happy person. Sure, there were things that I enjoyed like my family and my Terps (not lately) but I had lost faith. The compassion that I've experienced over these past few weeks has made me see the good around me once again and I am happier now than I have been in a long time. That probably doesn't make much sense but it's the truth.

So, to all of you who have helped me find some sense of peace, thank you.

PET Results

2006-07-16T22:36:00.000-04:00

July 5, 2006 - I was scheduled to get my stitches taken out and was hoping to get the results from my PET scan. They told me it would take 24-48 hours so they should be in by now.

I headed to Dr. Hermansen's office during the lunch hour. Her office is very close to mine so it's convenient. Dr. Hermansen wasn't in since it was her day for surgery so her nurse practioner was going to take my stitches out. I met her once, briefly, prior to my surgery when she came in to feel the lump in my neck.

The nurse practioner was very nice but very new, and it showed. In fact, I later learned that I was her first patient. She apparently was literally right out of school. As she was removing the stitches, I think she nicked me with the scissors and caused me to bleed a little. I didn't mind. I told her I was sorry she was being thrown to the wolves so soon with a case like mine as her first and she replied that it was good. She of course amended her response by saying that it wasn't good that I had cancer but it was a good learning experience for her.

Once the stitches were out, I asked if the PET results were in and she said that they were and then got a copy of the report for me. I went into this appointment with two goals for the PET. One, that the cancer did not show up anywhere else in my body. Two, that they'd be able to locate the source of the primary tumor. The report stated that there was a large mass in the area of my surgery that showed hypermetabolic activity. It also stated that there was a spot at the base of my tongue on the left side that was suspicious as the primary tumor site. Finally it stated, and I will remember this clearly for the rest of my days, that there was no evidence of distant metastases. It graded my cancer as grade IIA which, all of a sudden, didn't sound so bad.

The results were as good as I could have hoped. I felt a great rush of relief and was overcome. I wept in front of this poor nurse practitioner and she sat silently wondering, I'm sure, what to do. So much for the "no more tears" promise.

As I composed myself, the nurse practitioner apologized for not knowing too much about how to interpret the results or the staging. She printed some information from a cancer website that helped explain what it all meant. At that point, it didn't matter to me. I felt like the weight of the world had been lifted from me and I was energized and ready to fight.

After thanking the nurse practitioner and office staff, I left Dr. Hermansen's office and headed straight for a Borders that was right around the corner. I purchased seven books to help me better understand what I have and how to beat it.

That night, I received a call at home from Dr. Hermansen. It was actually after 9:00 so I was surprised to hear from her, though glad and appreciative that she would take some time that late to call me. We talked briefly about the results of the PET scan and what I needed to do to plan for the next step. She referred me to one of her partners, Dr. Josef Gurian for a consultation and second opinion. In fact, my appt. with Dr. Gurian had already been scheduled for the following Friday afternoon. I was looking forward to meeting him.

PET Scan

2006-07-14T16:28:00.000-04:00

July 3, 2006 - We ended our fourth of July plans at the beach early to get back for my PET Scan. It was originally supposed to be done on 7/5 but as luck would have it, I was able to get it moved up a couple of days. For anyone who doesn't know what a PET (Positron Emission Tomogrophy) scan is, here is the Wiki definition - PET Scan.

As soon as I walked into the office I felt terribly out of place. The waiting area was small and there were a number of other patients there. Every one of them was elderly. But what was really remarkable about these people was the look of utter defeat that they all shared. I felt sorry for them and scared for myself. These people looked like living, breathing ghosts. They had no spirit. Their skin was sallow, as though they had exhausted their last drop of blood long ago. Their eyes were distant and empty. It truly looked as though these people were waiting to die. Was this my fate?

When my name was finally called, I was escorted to a small room with a comfortable reclining chair. A nurse asked some questions to make sure I did as I was instructed prior to arrival - drink plently of water, no food for at least 6 hours, no exercise in the last 36 hours, and no metal on my clothing. When she was sufficiently convinced that I had obeyed these instructions, she inserted an IV line into my arm. The nurse then opened a lead briefcase that contained a lead vial encased in form fitting foam. It looked like something out of a movie. She removed the vial and attached it to the IV line to administer a clear liquid.

The way PET scans work is actually pretty cool. The clear liquid is radioactive sugar and the test is based on two principles: 1. Cancer cells divide much more rapidly than normal cells and thus are considered to be hypermetabolic and, 2. Cancer is a sugar feeder. It derives energy anaerobically by burning sugar. So, the PET machine looks for these radioactive sugar molecules in the body. The highest concentration of these molecules will occur in areas of hypermetabolic activity, i.e., tumors, which will show up on the PET scan as bright yellow and white spots like a sunburst in an otherwise dark sky.

After the liquid was administered, the nurse reclined my chair, dimmed the lights and told me to relax. I could not get up and move for approximately 45-50 minutes. This quiet time was actually very nice and I imagine many people fall asleep but I used this time to practice breathing and mantra. It is important to focus on breathing deeply from the diaphram and exhaling slowly. Not only does this serve to calm and reduce stress, it helps to properly oxygenate our healthy cells and protect them from the cancer cells which, remember, are anaerobic. While breathing in deeply and exhaling slowly, I would repeat two thoughts: 1. "Defense cells, seek and destroy the cancer cells," and, 2. "I will beat cancer." I try to couple this with visualization techniques such as imagining the cancer cells being destroyed by one of those laser-guided missiles with the camera on it like we saw on CNN during the first gulf war.

After about an hour, someone came to retrieve me and let me use the bathroom. I was then shown to the PET scan machine and, much like the CT scan, was instructed to lay on a table that retracted into the machine. Like the CT scan, I had to remain perfectly still. Unline the CT scan, I had to lay perfectly still for a full 27 minutes (17 minutes for one scan and 10 minutes for a second one.) Again, I practiced breathing, mantra and visualization to keep my mind off of having to stay still.

Finally, the test was complete and I was free to leave. As I entered the waiting area once again, I saw that I was now the only one there and that the office had actually closed. I had been there for a total of 2.5 hours. One nice thing is that they give you a goody bag once you're done with a cookie and some crackers. Having not eaten anything for the past 18 hours, that was the best damned cookie and crackers I've ever had!

Now, the agony of waiting again. This time to know exactly how far this had spread throughout my body, if at all.

Stay Positive

2006-07-11T23:27:00.000-04:00

When you tell someone you have cancer, they usually don't know what to say. Most will say something along the lines of "stay positive." They all know that it's much easier said than done. For me, that is especially true.

Anyone who knows me knows that I'm generally a "glass is half empty" kind of guy. I like to refer to it as being stoic or practical but the reality is its just negative. One of my biggest challenges ahead will be to change this perspective but I know that I must. One thing I plan to do is simply smile more. It sounds silly and trite but smiling makes you feel better. Another thing that I can do is to count my blessings. There are many things that I have to be thankful for and here are some:

I'm thankful for my wife, Michelle. She has been a rock through this whole ordeal so far. I'm awed at how strong and supportive she's been.
I'm thankful for my son, Mason. It's amazing how much joy a little boy can bring with just the simplest things like hearing him giggle or watching him play. The other day I took him to the driving range to hit golf balls and then to get some ice cream. As I'm watching him eat, he stops, looks at me and out of nowhere says, "Daddy, I love you" before going right back to his ice cream cone. Nothing in the world could ever make me happier.
I'm thankful for friends and family that have been so willing to do anything they can to help out.
I'm thankful that Michelle and I both work at companies that are so understanding and flexible.
I'm thankful for the wonderful doctors and nurses who have cared for me and have gone well out of their way to expedite this whole process.
More than anything, I'm thankful that this happened to me instead of my wife or son.

When Mason was a year old, we had to admit him to the hospital for an unexplained fever that lasted well over a week. Of course we scoured the Internet for information and were terrified by what we found. One of the possible causes was leukemia. I was never so scared in my life. I prayed to God that if Mason really was sick, that he give that sickness to me. After a few nights in the hospital, the fever went away with no real explanation as to the cause.

Perhaps this is God's way of answering a prayer and if it is, I'm thankful.

Cancer

2006-07-09T14:17:00.000-04:00

Cancer. The word itself is so ugly, so repugnant. The evening of my surgery is a bit of a blur to me now. I went straight to bed when I got home and between fitful states of semi-sleep, I made an attempt to call some people to let them know the diagnosis. I also got online to begin researching any bit of information I could find about Squamous Cell Carcinoma. Initially, what I found was not very encouraging with statistical five year survival rates somewhere around 50/50.

The large dressing on my neck was uncomfortable but, thankfully, I was not in a tremendous amount of pain. In fact, I didn't even need so much as a tylanol much less the vicodin that was prescribed for me. Michelle was great attending to my needs and making sure I was comfortable.

The next day I woke up still a little groggy from the anasthesia. I did manage a client call in the morning and made it into the office that afternoon, not that I really did much. I had an appointment with Dr. Hermansen that afternoon to have the dressing removed and discuss the results.

I arrived with Michelle at the appt. at 5:30pm as scheduled. Dr. Hermansen wanted to see us last so we waited until about 6:00 before she saw us. First she removed the dressing and drainage tube and said that the incision looked fine otherwise. She also told us that she had the pathology results sent to the Armed Forces Institute of Pathology for review since they were so unusual. Apparently, the AFIP is the preiminent institution in the US for this type of work. I didn't quite understand why they chose to consult with the AFIP, though. At first, it seemed as though she thought there was a chance that the initial cancer diagnosis was not correct and I momentarily got my hopes up. However, she confirmed that there is not doubt that the cancer diagnosis was accurate. I guess there are some sub-classifications that the AFIP could help with. Also, she wasn't sure if what she removed was a lymph node or something called a bronchial cleft cyst since it was so badly damaged. She told me also that my cancer is very well differentiated. I don't know what that means but I guess it is better than the alternative. Well differentiated carcinomas tend to have a better overall prognosis than undifferentiated... so I've got that going for me, which is nice.

We talked a little about treatment options and Dr. Hermansen reiterated that she thought I had a pretty good chance of beating this thing given my age, general health, etc.... I have to stay positive, she said. I asked her about consulting an oncologist and, surprisingly, she said that it's probably a little premature to do that. Primary treatment for this disease is surgery and radiation and the surgery is done by her (actually, one of her partners whom I would meet later). She did welcome a second opinion, however, if I felt compelled to consult an oncologist.

As we left the appointment, I didn't quite know how to feel. I guess I wanted to hear something more assertive from her to make me believe that she believed I would be cured. Doctors are notoriously non-commital though so maybe I'm expecting too much. I did put on a good face and saw this moment as the beginning of my fight. From hear on out, no more doubts and no more tears. It's time to get my gameface on.

The office was completely empty as Dr. Hermansen escorted us out. I knew she stayed well beyond her normal office hours for my benefit and I appreciated it.

The Diagnosis

2006-07-06T22:54:00.000-04:00

June 28, 2006. Usually, fasting for 12 hours prior to surgery would be difficult for me but not today. Truthfully, I haven't had much of an appetite since all of this started. I know I need to eat to keep my strength up but depression and anxiety are a pretty good one-two punch.

This happened to be the one day during this entire week that we actually got some sun. It was certainly hot though. I thought this might have been a good omen. I arrived at the hospital at 12:3o pm, 1 and 1/2 hours prior to the scheduled surgery. My wife Michelle met me there shortly after and we were ushered into a pre-op waiting area. These areas are not very private. It actually looks like a big triage room lined with beds on either side. Curtains are the only thing seperating patients as we're told to undress and then poked with needles and asked a battery of the same questions over and over again. I was amused by the fact that one of the nurses was required to ask me if I knew what I was there for and instructed me to physically point to the area that was to be operated on. Hospital regulations. She then drew a big "X" in marker at the site, presumably to make certain that they don't cut into the wrong side. You hear these stories of people who go into surgery for things like a tonsilectomy and come out with one leg amputated. I guess they don't want to mistakenly amputate my leg which is nice.

Michelle has done an excellent job of keeping me calm through this. The anesthesiologist finally comes in and tells me that they are going to use a breathing tube on me and I don't like the sound of that. After some time, Dr. Hermansen comes in to go over exactly what she is going to do and the technique she plans to use. I guess it's a little more complicated than simply cutting me open and grabbing the thing with some tweezers. The CT scan showed only one node instead of the multiple nodes that she thought she felt. Looking for a reason for optimism, I commented that this was a good thing, right? Her response was something along the lines of ,"Maybe... we'll see." It's time for me to go. After a kiss and hug from Michelle, I am wheeled into the operating room. The last thing I remember is the doors opening, a bright light and being very cold.

I've had general anesthesia before. Each time it was very difficult to wake up and get my bearings. However, this time I woke right up. I saw Michelle sitting to my left. She had been crying. Although I knew why, I was still too groggy to put two and two together. A minute later, Dr. Hermansen came in and immediately said, it's cancer. I asked if it was Hodgkin's and she said no, something entirely different. The initial pathology showed Squamous Cell Carcinoma and while I didn't know what that was, it just sounded bad. Dr. Hermansen was perplexed since this is a type of cancer that usually affects older people who smoke and drink heavily. I am only 35, have never smoked and rarely drink. The only thing I could think was that this was just my luck. I couldn't even get the type of cancer I wanted. Dr. Hermansen tried to be reassuring by telling me that she's had many patients that have recovered from this. One of them is a 26 year survivor, apparently. More people survive this than do not she tells me. However, the nurses seem very sad and I wonder if they know something more that I don't.

The drive home was quiet and I fell asleep.

CT Scan

2006-07-06T10:47:00.000-04:00

June 27, 2006. It poured that day. Actually, the entire week was one of the wettest in recent memory. I think we got close to 10 inches of rain when all was said and done. I started the day with a customer meeting which helped take my mind off of things since this is a customer I've been chasing for quite some time. Fortunately, the meeting was very close to Reston Hospital where the CT scan was to take place so I easily made it in time for my noon appointment.

I had been to this radiology department before. Last year, my son had a CT scan of his sinuses as part of some tests he went through with his allergest. I remember having to wait at least an hour on that visit which is not exactly easy to do with a 3 year old. I anticipated another long wait given the number of people ahead of me.

The visit did not start off well since the woman checking me in could not find me in the computer. I thought, "please don't tell me I'm going to have to come back." Thankfully, she was able to straighten everything out after a couple of calls. Since I was a late addition, I wasn't on her schedule. This discussion was followed by another snafu with another employee who was going over all of my contact and insurance information. I really don't remember exactly what it was he was saying but the gist of it was that he thought I needed to go to some other department entirely. He must have been new because he was relatively young and a supervisor type was hawking over him the whole time. This woman was born to be an administrator. She was impeccibly dressed with perfectly coiffed hair and an air of polite condescension that made me glad she wasn't my boss. But, she set this poor young man straight and saved me a needless detour so I have to thank her for that.

The daily Washington Post crossword seemed unusually easy as I waited. I had quickly gotten through half of it when a kind looking gentleman in his mid 40's came to collect me. I later found out that Robert, as he introduced himself, was actually the director of the radiology department. The first stop was a comfortable locker room where I was instructed to hang up my shirt and store my watch, PDA, etc.... Robert then led me down the short hallway to the CT machine. As we walked, he asked me what I was having done and I explained the lump in my neck and that it was most likely some form of lymphoma. I asked him if he had seen many of these and he replied in a very good spirited manner, "too many to count." It turns out that Robert is a radiology lifer having started there and a tech. assistant at the age of 19. Then he told me that if it was lymphoma, the bad news is it's cancer but the good news is that there are a whole lot of things that are worse. He had a knack for putting me at ease with his down-home, almost country appeal.

For anyone who is not familiar with it, a CT scan (computed tomography) is a computerized x-ray. I was instructed to lay on a platform-like table while Robert injected me with a contrast solution. Apparently, I have very good veins which, according to Robert, are a valuable commodity for cancer patients. The contrast solution washes through me with a warm flush. I liken it to the feeling of peeing in your pants.

Once injected, I was told to lay very, very still once the scan begins. It's a quick process so the laying still isn't a problem. The problem is that you're not allowed to swallow either. If you've never been instructed to not swallow, trust me when I tell you that your immediate reaction to this command is an overwhelming urge to swallow. It certainly didn't help when Robert quickly said, "by the way, drink this" just before the test started and gave me a shot glass full of a gelatinous, yogurty-type substance. At this point, the platofrm begins to move into a long tube-like structure like a giant tongue slowly retracting into a hungry mouth.

The CT scan is done in a matter of minutes and Robert escorts me back to the locker room. As we're walking, he tells me a story of a woman he went to high school with who was diagnosed with lymphoma but went on to beat it and now has a happy, healthy family. I told him that he is an excellent care-giver and that I appreciated his words more than he could imagine.

Humanity is an amazing thing. The good in people is becoming more and more apparent to me.

The First ENT Appointment

2006-07-05T01:21:00.000-04:00

I first met with Dr. Karen Hermansen of Ear, Nose and Throat Specialists of Northern Virginia on Monday, June 26, 2006 for what I thought would be a fine needle aspiration biopsy. A matronly woman, she initially looked to be better suited to baking than surgery. Despite her outward appearance, I could tell immediately that Dr. Hermansen was an expert in her field. What's more, she was the first medical professional to give me an honest opinion which was that she believed I had Hodgkin's lymphoma. I asked her why Hodgkin's vs. the non-Hodgkin's variety and she said that it was a hunch based on my age more than anything. She answered a few questions from my wife and I and then assured me of what I already knew which was that of the cancer types, Hodgkin's is one of the most treatable with one of the highest overall cure rates. She further put me at ease by expressing a sense of urgency I felt had been lacking by the various medical professionals I had dealt with so far. Dr. Hermansen decided to forgo the fine needle aspiration in favor of an open, surgical biopsy because she wanted to get pathology results as quickly as possible. When doing surgical biopsies, a pathologist is on site to give initial results right away. If she were to do the needle biopsy, the sample would have to be shipped somewhere and results would take a week or more to get back. She then instructed her assistant to clear a time for a surgery the following Wednesday, June 28. This would not only take some "negotiation" with the hospital but required some fairly significant alterations to her own schedule. She also began to give me instructions on how to schedule a CT scan for the following day but then stopped herself. Realizing that my head was already spinning, Dr. Hermansen picked up the phone herself and got me on the following day's radiology schedule at Reston Hospital... no small feat. This urgency and reassurance was exactly what I needed at the time. Thank you Dr. Hermansen.

Before we left the office, Dr. Hermansen asked me to come back into the exam room. She had a new Nurse Practitioner and asked if she could feel my neck as a learning exercise. As the nurse practitioner felt the mass, Dr. Hermansen described it as a "classic presentation" of lymphoma since it appeared that several lymph nodes had fused together.

I left her office still anxious and scared but somewhat hopeful that at least I had the "good" cancer. (my friend Ed, the writer mentioned below, who just finished treatment for Hodgkin's used this term and said it was from an episode of Curb Your Enthusiasm. I don't watch that show so I'll have to take his word for it.)

The Beginning

2006-07-04T03:10:00.000-04:00

This started about 5 weeks ago. Actually, that's not true, it started at least three months ago when I first noticed a lump in my neck. It wasn't a lump in the sense that you might think. That is to say it wasn't particularly round but more oblong like a small muscle under my left jawbone. At first, I didn't pay too much attention to it which is why I can't really place exactly when I first noticed it. Some time in April 2006 I pointed it out to my wife Michelle who didn't think much of it at the time either.

Between April and early June 2006, I noticed that this lump had taken on more of a egg-shaped feel, probably about the size of a walnut shell. I began to think it was time to make an appointment with my doctor to get it checked out but put it off for a few days because, frankly, the demands of a new job kept my mind on other things. I guess I have one of my colleagues, Tim Keating, to thank for finally making that first appointment since I overheard him making a doctors appointment himself one day which reminded me to do the same. I still wasn't particularly worried and initially thought it was just a swollen gland or, at worst, a goiter.

I called to make the appointment with my primary care physician on a Thursday in early June 2006. I'm not sure what type of reaction I expected from the woman who took the appointment when she asked me the reason for my visit but I do know it wasn't the reaction that I got. The alarm in her voice was quite noticeable when I explained the lump in my neck and its duration and she put me on the schedule for the following Monday, June 12, 2006. This was the first time that it occured to me that I may be dealing with something serious. But what?

Well, like anyone in the Internet age, I went straight to Google with a series of searches such as "lump left side neck," and "lump under left jaw." Try it and see what comes up. You'll see why I quickly became convinced that I had lymphoma. My initial visit with my primary care physician did nothing to put me at ease. He asked me questions about fatigue, night sweats and unexplained fevers. He asked me if I had been around any cats. Of course, since I had spent the previous 72 hours glued to the Internet researching lymphoma, I knew exactly what he was getting at. He then measured the lump at 1.5 x 3 cm which seemed huge to me considering you couldn't really even see it.

My primary care physician referred me to an ENT and prescribed both a chest x-ray and a sonogram of my neck. The first ENT appt. I could get was for two weeks later on June 26. Actually, the first ENT that I called didn't want to get me in until the end of July despite my empassioned explanation of the potential gravity of the situation. So, a word of advice, unless you're really set on a particular doctor, keep checking until you find someone who is willing to see you on your timetable since it could, quite literally, mean the difference between life and death.

Those two weeks between doctor's appointments are somewhat of a blur. My anxiety level continued to increase. I became sullen and somewhat depressed. I stopped working out and lost my appetite. I focused on matters of practicality like the fact that I didn't have enough life insurance and how I wouldn't be able to get more now. How would my 4 year old little boy grow up without a father or, worse yet, a different father? This was truly one of the worst periods of my life. I had a very brief reprieve after speaking again to my primary care physician who told me that my blood work was perfectly normal as was my chest x-ray but I also realized this this is not uncommon with lymphoma. I also spoke to a friend who recently finished treatment for Hodgkins lymphoma and while he was kind enough to tell me all about his experience and answer any questions I had, he pointed out that I was getting all worked up before actually knowing anything. He also said something that will probably stay with my for the rest of my life and should be the title of the book that I suggested he write about his experience (he's a professional writer) which was, "It's just lymphoma." A pretty remarkable perspective if you ask me. So, all this helped a little, but not for long. My first ENT appointment provided a new dose of reality.