Alternative Therapies

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.