I was diagnosed with squamous cell cancer of the neck, occult primary, on 8/29/97. This diagnosis came about after I noticed a small lump just at my beardline when shaving one day (around 8/15/97). I figured I was probably coming down with a cold or something, and thought it may be an enlarged lymph node. I watched it for a few days, but when no cold developed, I got concerned and made an appointment with my family doctor to get it checked out. She said it looked like a swollen lymph node (sound familiar?), and ordered a blood test, and put me on ten days worth of antibiotics. Also, I had a carotid doppler ultrasound done to make sure there wasn't some kind of carotid artery blockage going on. Everything came back normal, and the ten days of antibiotics didn't affect the lump (officially called a "mass" by now). All through this she kept asking me if I smoked. And I don't. And never did.

The doctor still didn't have an idea, and asked again if I smoked. No, I still don't smoke. This lump just didn't feel right - it seemed to not be a part of me, somehow. My father died from colon cancer, and he made me promise that I would get checkups (which I have), and not "let something go," if something suspicious developed. I was getting real suspicious at this point, so I made my concern an issue with the doctor, and insisted that further investigation be done. We scheduled a neck CT (CAT scan), and made an appointment with an otolaryngologist at the Barrett Center here in Cinti., OH.

When I got the neck CT back there was a note in it to the doctor from the radiologist that basically said there is a mass of approximately 3 cm in the left neck, would investigate metastatic disease. This was my first cause for real concern in this adventure . . .

On 8/28/97 I met for the first time with Dr. Lyon Gleich at the Barrett Center. He seemed pretty young to me (I was 43 at the time), but very forthright, and to-the- point. We described what we had done up to that point, gave some history, and asked if he could tell us what is going on . . . He looked around in my nasal and throat area with a scope (which gagged me somewhat). He felt of the "mass" and sat down to discuss. He said that I have a tumor, and in the neck area when you're talking tumors, you're usually talking cancer.

CANCER???!!

There. It was finally said. At that nanosecond my life changed forever. A tickertape starts running at that moment, and it doesn't stop. Even if you are able to distract yourself, it's still going in the background, just waiting for an opportunity to jump out front again! I cannot in any way truly describe the feelings at that instant. It's numbing. It immediately puts you into a dreamworld where things that are being said around you seem muffled, and distant. Your mind reels with the impact. You consider denial. You feel like bolting. You want to destroy something. On and on . . .

But, I was able to keep my cool, and discuss it, because I wanted to know more. Needed to know more. Lots more. This was my life we're taking about here! I have a wife and three daughters. A family that needs me. I have to live!

The doctor said that since I wasn't a smoker (there's that word again), chances are that I have lymphoma. A very remote possibility was that it could be squamous cell cancer. And all this was just from feeling of the tumor!

The only way to find out for sure was to do a biopsy. The pathologist (Dr. Muir) came down to do a thin needle biopsy of the tumor. This was fairly painless, for me. A very thin needle is used to take core samples of the tumor. He took three "samples," each from different areas of the tumor. I asked him if one more sample would help in identification of the cancer type. He said if I didn't mind, sure. So four samples were taken. Results due back tomorrow . . .

On the morning of 8/29/97, I received a call at work from Dr. Gleich. He asked if I could come in to talk. Well, I knew what that meant . . . I told my boss what was going on - what I knew to date. And he was very understanding. I called my wife, and met her at Dr. Gleich's office (fortunately, she works at Children's Hospital a block away). That tickertape was running at full speed about now . . .

When we met in one of the small examining rooms, he told us the news. He was surprised to find out that it was squamous cell cancer of the neck, occult primary. He really expected it to come back lymphoma. He did another nasal/throat examination. This time a bit more thoroughly, to try and find any evidence of problems in my throat or nasal passages. He commented that there was a slightly suspicious looking area on my tonsil, but he couldn't really tell anything specific at that time.

OK. Now it was official. I asked the likelihood of error. He said it was probably 95% accurate. So what do we do now? This is where it gets scary, when YOU are the one in the hot seat! He began explaining that occult primary meant that the tumor in my neck was actually a metastisis from another "unknown" tumor site. Great. Now I not only have a tumor in my neck, but another tumor somewhere else in my body that is cancerous. Oh, and by the way, we don't know where in my body . . . He described how the squamous cells are the skin cells, and that if you have an obvious lesion on your skin, say your arm or face, you would know about it. But, if there is a squamous cell problem somewhere else, where you can't see it, it would most likely be in the lining of the nasal passages, throat, or down into the lungs (squamous cells also line the mouth, throat and down into the esophagus).

Dr. Gleich also explained how it is actually (contrary to my logic) better to not find the primary site, because that would mean that the primary tumor has not had a chance to grow large enough to be real resistant to radiation treatment. Which leads to the question of what are the treatment options?

We were told that the only standard treatment options for this situation are surgery and/or radiation treatment. In a very small number of cases chemo would be considered, but not mine. His recommendation was to do surgery followed by a course of radiation treatments. The surgical procedure is called a radical neck dissection. I will describe this in more detail below.

Talk about shocking. I have gone from official diagnosis of cancer to surgery in a matter of minutes. My head was reeling. It was a good thing I was already sitting down, cause I would have probably collapsed!

Dr. Gleich wanted to schedule the surgery as soon as possible, so we booked a time for the following Friday - 9/5/97. I can't tell you how disorienting this all was. I was in a fog.

When my wife and I got home, we had some emotional moments. I guess it's only human to project various scenarios of what may happen . . . I know I was seeing myself butchered, incapacitated, useless, and even dead in some of these imaginary scenarios. The mind is a powerful thing, with the imagination working at full tilt!

Another thing that really made me angry was the fact that the next day (Sat. 8/30/97) we were going to be celebrating my daughter's 6th birthday with all the family at our house. Now how are you supposed to keep on a "happy face" with news like this on your mind? Tell me please.

I think that one of the hardest things to do is tell people you love about bad news like this. I had to tell my other two daughters (aged 18 and 22), and my mother and sister, and her family. And all my friends and extended family.

I went to Lexington, KY to pick up my oldest daughter to bring her up for my 5 yr old's 6th birthday party. When I got there, I asked her if there was a park close by. It was raining that day. We went a few blocks to Woodland Park and parked. No matter what you try to say, or how you try to say it, there is no easy way to tell your daughter you have cancer. I started by telling her that I was sick. And was in the process of planning a way to get better. By then she knew. And she started crying, which just made me lose it. We embraced, and held each other for a few minutes, and then I explained what I knew . . . That initial news is so hard!! God bless you dear.

Then I had to tell my 18 yr. old who is away at school. I didn't want to write a letter to tell her something like this, for sure. I wished that I could see her face to face, but she was 4 hours away. She was already aware that I had a "lump," and made me promise to let her know when we knew what was going on with it. I decided to call her. I felt so bad having to tell her this over the phone, but she did want to know about it . . . When I broke the news, she cried, but kept her composure pretty well. And she tried to comfort me with words. God bless her. I told her that things would be alright in time . . .

Telling my mother was going to be real difficult. Just that week, she was telling me that she was finally feeling like she was getting over Dad's death in 11/91 (from colon cancer). Whew, this was going to be tough.

My mother knew that I was seeing the doctor about this "mass" in my neck. When I first told her that it was cancer, she was real quiet. But I could tell, she was having difficulty with it. She quietly said that it wasn't right that both of the men in her life (my dad; and I'm an only son) had to go through this. She took it well. I think that the native Indian blood in her makes her strong. And she finds strength in God as well. God bless you Mom.

When I told my sister, we sat on the back steps of her house as dusk turned to darkness. She took it well, and told her family, in time. She always looks at things from the bright side. A positive person. A good person. She was really there for dad when he went through his battle. God bless her too.

From there on, I just told people as the time seemed right, and eventually, I started sending out weekend updates to an email list of dozens.

Another strange task was telling my coworkers. People that you have worked with for decades know you pretty well. And you them. But when you have news like this, it is awkward to say the least. You tend to think about all the other coworkers over the years - some that died of cancer . . . but don't mention. I found the best way to do it is flat out drop the bomb. Most people are pretty understanding. I was fortunate that the majority of people that I work with are intelligent, and forthright. Even with something like this. I think people you tell this sort of news to, kind of gauge their reaction to what they perceive you as feeling, if that makes any sense? If you are in control of your situation, their reaction will be more controlled - and, OK.

OK. I have cancer. My staging was T-/N2a/M0. This is a way of describing the cancer in terms of where, how much, etc. The T- would represent the primary tumor site, but in the case of occult primary we don't know. The N2a represents the size of the "node" that is being removed. An N1 would be up to 3cm, N2a would be from 3-6 cm with one metastatic node (b would indicate multiple mets nodes). My tumor was right on the edge of N1-N2. The M0 indicates that there is no distant metastisis. Anything other than a "0" would indicate number of distant mets.

So what do I do about it?!

Dr. Gleich smiled his impish smile, and told me the options. Basically, for my situation, there are two "standard" treatments: surgery or radiation, or a combination of both. The surgery procedure is called a radical neck dissection. There are many variations of this procedure, but the classic procedure involves removal of all the lymphatic tissues in the neck (or a given side of the neck). This is accomplished by making two incisions in the neck (left neck in my case). These are in a sort of "T" shaped configuration - along the jawline, and down the side of the neck.

The goal is to get rid of the lymph tissue in the neck. In the process, the sternocleidomastoid muscle (neck muscle) is removed. This allows access to all the lymph nodes that may be hiding cancer cells. The spinal accessory nerve will most likely be severed as well, resulting in limited movement of the arm above the head. There will also likely be numbness of the shoulder, neck and upper chest areas.

There are certain rehabilitation exercises that can be done to help regain use of shoulder and neck muscles.

The surgery is typically followed by a course of radiation treatment. The radiation is administered to a field that includes the area from about the bridge of the nose, down to just below the clavicle (or, collarbone).

This treatments lasts 5-6 weeks typically. It varies for different situations.

I asked Dr. Gleich for the name of a patient who had gone through this same thing. I said I wanted to talk to someone to get a patient's opinion of what I was in store for.

I was given the name of a man that had had SCC like me, and had the neck dissection followed by radiation. His name is Richard. I was told he would call me that week. He did. From California (I'm in Cinti., OH). It turned out that he had the surgery 4 years ago, when he was 70 yrs old. He said the surgery wasn't that bad, but the side effects of the radiation were aggravating. He complained of dry mouth, some restriction of movement in his shoulder (but it didn't affect his golf game!), and a strange nasal flow problem that he said is not typical of this treatment. Otherwise, he didn't seem to think it was that big of a deal. I must say that it was very encouraging to me . . . (another reason I wanted to put up this site).

I spent the week between my diagnosis and surgery doing a lot of research on the disease and it's treatments. Much of what I found, I've provided links for on the SCC Links page. I learned that there are clinical studies going on that are investigating genetically engineering adenoviruses to attack cancer cells specifically. The only side effects are cold-like sysptoms. (Adenoviruses are cold viruses!). There are several studies going on in this country, and I was surprised to find out that a phase II study is being conducted right here in Cinti. at the Barrett Center! And Dr. Gleich is heading it up!

I asked Dr. Gleich about this, wondering if it may be something I might benefit from. He sort of chuckled, and said I was nowhere near having to resort to a clinical study for treatment. I guess that made me feel better about my position, but cold-like symptoms sure sounded better than radiation side effects and surgery!

I also looked into alternative therapies. But, I had to put some restrictions on these that would not allow them to conflict with the standard treatments I was going to get. I also had to consider whether or not my insurance would pay for them!

What I basically ended up doing was reading up on various supplements that I could easily obtain, and afford that seemed to show merit in fighting cancer. I list the things that I took, and am still taking, on my links page under the "Help" section. There are some links to places with info on things like Essiac, 714X, selinium, etc.

Dr. Gleich didn't seem to think that the primary would be found in my lungs, because my neck tumor was too high up on my neck. He said that usually, when the lungs are primary, the tumor is down lower on the neck, or around the clavicle.

Thank God he was right! My lungs were clean. You don't know what a relief that was to hear! But I still didn't know where the primary was . . .

Prior to surgery, I had to go in for pre-op testing. They get your medical history, and basically give you a physical. No big deal.

Dr. Gleich and I agreed that the plan would be to go in under general anesthesia for (1) a panendoscopy (where they look around in various airway passageways, and do a bronchoscopy to look for suspicious areas); and (2) the neck dissection. But, if the primary site was found during the panendoscopy, I would be awakened so we could discuss the next plan - and the neck dissection would not be performed.

September 5th came pretty quickly in some ways, and took forever in other ways. But it did arrive. Prior to that day, I tried to steel myself for the surgery, and the possible resulting disfigurement. I often wondered what I would look like after the surgery. How noticeable would the scar be? Would I be missing a huge chunk out of the side of my neck? Lots of things go through your mind . . . Phantom . . . Dark Man . . .

I had to be at University Hospital at 5:30am! That's early.

Got there and signed in. Let me tell you, when your name is finally called to "go on back," it makes a trip to the dentist seem like a walk in the park! Nerves are going nuts! But, this is to be expected.

I must say that the people working there were great. The rooms were like an upscale suite, with hardwood floors, and darkwood furniture with bookshelves, and all the amenities. Impressive. Hey, that's it! I am just dreaming all this stuff!! Nope. It's for real. The pastor just walked in. Pastor Dukes from my mother's church paid an early visit to pray with me before going under the knife. I really apprecitated that. He's a good man.

A couple of my uncles showed up too! All this support was very important to me (and my wife). All the warm wishes and prayers certainly gave us faith and encouragement.

Next thing I knew they were sticking an IV in my arm. The nurse anesthesiologist said "you have nice veins, do you work out?" Yeaaah. I lied. And winked. Then I was gone. . .

Then next thing I remember was waking up real groggy and noticing that my neck was still intact.

Dr. Gleich found the primary tumor on my left tonsil. It was not real obvious to look at, but he said he found it by feeling of it. He removed it, and woke me up - as he said he would.

Now my diagnosis has changed from squamous cell cancer of the neck, occult primary, to SCC tonsil primary. I guess this means I can fill in that T-/N2a/M0 with a T1/N2a/M0 now.

Now what? Dr. Gleich said that they would biopsy the tumor from my tonsil, so we could both verify that it is SCC, and get a better idea of what we're dealing with. We scheduled a meeting for next Friday . . .

During the following week, my throat was very sore, and the medication (roxicet) I took helped immensely. I didn't really realize how much until I stopped taking it! I also had some pretty strange dreams when I stopped taking the roxicet, along with restless nights and hot and cold "spells."

I spent the week reading a couple of real good books for people going through this. Dr. Bernie Siegel's Love, Medicine & Miracles, and Larry Burkett's Damaged, But Not Broken. It just so happened that Dr. Siegel was in town for a lecture this week, so my wife and I went. It was encouraging. I spoke with him afterwards, and he seemed to think I was doing well with my "news," and that I was taking the right approach to dealing with it.

We met with Dr. Gleich at 10:00am on Friday, 9/12. The biopsies that were done showed that I did indeed have squamous cell cancer. We also discovered that the tumor is made up of nonkeratinizing squamous cells. This means that the tumor is not as hard as keratinized tumors. And as such, should be more responsive to radiation treatment. With this in mind, the decision was made to forego the neck dissection for now, and start right away with radiation treatments.

Minutes later, Dr. Gleich introduced me to my radiation oncologist, Dr. Redmond. We discussed the treatment plan and potential side effects. Details in Chapter 2 . . .