more background ...

My diagnosis has changed since then, and I will be starting chemotherapy and radiation tomorrow.

The oral surgeon referred me to an ENT (ear, nose, and throat doctor) since ENTs have a better knowledge of the entire head and neck. Since this is the area my type of cancer typically spreads to, an ENT is better suited to perform the surgery.

My ENT was very confident and a good doctor, but looking back we might have done things differently. What we decided to do was to get into surgery right away, which is desirable because you want to keep things from spreading. Surgery involves two parts: the first part is using a laser to carve out the cancerous piece of my tongue as well as a "good margin" around it. After this is done, the piece of tongue is sent to a lab to make sure the margins are good. While this is happening the ENT performed a neck dissection; this involved cutting from my right ear to the center of my neck and taking out 26 lymph nodes in the upper neck. This is really done for exploratory reasons--to see if the cancer has spread to the lymph nodes. In almost all cases the cancer only spreads to the lymph nodes on the same side as the primary cancerous area. One doctor explained your body as a divided highway, and that the fluid coming off the tongue from the right side drains to the lymph nodes on the right side. There are actually about 50 lymph nodes from your ear to the upper neck on the right side alone; however getting all those lymph nodes involves a deforming surgery and does not offer any more real benefits.

The surgery apparently went really well, and the surgeon was happy with the margins on the piece of tongue he took out. (My own opinion of the surgery was that it sucked and it hurt like hell to swallow for a week.) After about two weeks though, we got the bad news that one lymph nodes came back cancerous. But, the cancerous part of the lymph node was only 4mm and it was very close to the right ear, which is the first place the cancer could really spread to. This did automatically place me in the 4th stage of cancer (the last stage), but the ENT didn't want to jump into radiation because the cancerous piece was so small and in a "good" location. In other words, it looked like we were in the clear even though it had spread to the lymph nodes. I should also say that I have an uncle who is the dean of a medical school who shared the reports with some of his doctors and they all agreed to wait on radiation. One of the factors was my age. Radiation on the head and neck is harsher than other areas due to all the sensitive material in your head and neck. Also, parts of your body have a certain tolerance on how much radiation they can handle. So that if I got radiation on the head and neck now, I probably couldn't get it on that area in the future in the event a recurrence did happen.

Again, the odds suggested we took care of everything. I was sent to a radiation oncologist and the University Medical Center (UMC and U of A) for a consultation, and he concurred that I was probably cancer free. However, he did stress that we could not declare victory for five years. The reason being that if the cancer did spread to other areas of the body it would take up to five years before it was big enough to show up on a scan. And if this did happen, my survival rate would plummet. Once cancer spreads it is very hard to contain.

As a safeguard, I was sent to get a PET-scan to verify there was no cancer left. At this point, I was hopeful, but willing to accept a positive result. Still, despite my doubting the results would be negative, I was crushed when they came back positive. I just felt like there was no end to the bad news. Its not a good feeling for every piece of news to get your hopes up only to have them crushed. First, the oral surgeon doubted that I could possibly have cancer- wrong. Then the ENT doubts that the cancer could have spread- wrong. Not that they were errant in their decision making, because I am a rare case. Twenty-six year old non-tobacco users generally don't get cancer, and if they do and its treated quickly the success rates are very high.

The results showed that I not only had a region of positive lymph nodes on the right side, but also two positive lymph nodes on the left side. This was unexpected. For the right lymph nodes to be positive was alarming but not too remote a possibility, and for the left lymph nodes to be positive was a serious matter and cause for concern. The concern is that if the cancer could spread from the right to left side of you body then where else could it have gone to?

While I took this is bad news, the ENT was sent this results via the radiation oncology people, and he took it as false news. He said he flat out didn't believe it, asked me to come to see him, and told me I needed a fine needle aspiration done on the lymph nodes. This involves using a needle to take a biopsy. The doctor simply takes a needle, sticks it in your neck, uses it to get a piece of a lymph node, and then analyzes the piece for cancer. The whole process only takes a few minutes, which meant I only had to wait a few minutes to get more bad news--the lymph nodes were cancerous.

I should explain really quick that PET-scans just pick up areas of your body that are overactive in processing sugars. So your heart, brains, testes (if you have them), and etc will all show up positive. If you are sick then your lymph nodes will also show up positive because they are working harder than usual. The ENT was so convinced that I was sick, that he sent me out of his office with antibiotics, and said he didn't believe this could be cancer.

I am too tired right now to describe the emotional blow of again having your hopes shot up like Roger Clemens' veins only to have them shrunk like his private parts, and I feel bad that my blog so far has been as exciting to read as the pathology reports I have gotten back. In the future I will try and provide a little juicier material.

I should also say that I am still very optimistic about the future. Things are more serious than I like them to be, but there are still a lot worse things that happen in life than having cancer and going through surgery, chemo, and radiation. I look at my sister whose boyfriend was killed a few years ago, and think I would much rather go through this. Everyone has to undergo their own trials in life, and I consider myself well-equipped for the battle. You have to remember that I was a member of the Seattle University Redhawks Cross-Country Cavalry and we did battle almost every Tuesday, Thursday, and Saturday. The endurance, courage, fearlessness, dedication, and will to fight that I developed as a runner are tools that I will use to be a success in this battle also.

My second strength comes from all of you who care about me and my situation, have taken the time to read this, or take the time to think about me during your day. Since you should always take away the positives from a seemingly dire situation, mine is that I am fortunate to be surrounded by a lot of people who love and care about me.

I will keep updates coming throughout the radiation and chemo process, which starts tomorrow. You don't need any more boring details on what happened to set all the chemo and radiation stuff up. If you want a general impression imagine trying to get a license to start a business in the former Soviet Union!