Cancer 101

****WARNING: this is a LONG post!****

A couple of housekeeping issues: 1)My early posts were written under the influence of some pretty awesome pain meds! I did not mean to imply to anyone that I didn't want to hear from you on email, via phone, text or through all the amazing cards I have received in the regular old snail mail. I LOVE hearing from every one of you! What I did try to suggest, is that I (and I believe MOST people) do not enjoy visitors when I feel crappy. Please visit me when I am well! 2) If you are still having trouble commenting on the blog, I'm sorry. Just go to the Google home page and register for a Google account. You have to do that, and log in, before you can comment. If you prefer not to, then just email me at tjoakes@bellsouth.net. I know there are lots of "lurkers" out there who never comment, and that's O.K. too!

So now for the post:

Cancer 101

In a way, it is much easier for me to negotiate the cancer landscape than it would be for most people. I sold drugs for cancer for several years (the drugs treated things like melanomas, brain tumors, breast and prostate cancers). Like all my pharmaceutical training, the study of the disease itself was incredibly intense. As a result, I know a lot more than I care to about how cancer grows, spreads and ultimately dies. I also spent 15 years in and around hospitals and physicians. They don’t intimidate me. The hospital is just a crappy hotel and doctors are just people . . . . .I went and married myself one, so I can tell you that they are human and that they make mistakes like everyone else . . .so . . . I challenge their decisions and suggestions at every turn . . .NOT to try and be difficult, but to make sure that they have really thought through what they want to do to me next. Let’s face it--treating patients is just their job. Haven’t you had days at yours when you weren’t as mentally alert or as “in to it” as others? Well, I don’t intend for that to be MY day at the clinic. Also, doctors speak a different language. They don’t mean to, they don’t even realize they are doing it . . .go back and read Jason’s post about my surgery and you will see what I mean. (Most days he speaks in perfectly understandable English but when he talks about anything medical he reverts to “doctorese” without even noticing it.) They certainly don’t mean to talk over the heads of their patients, but the words and terms and ways of describing things are so ingrained into their vocabulary that it doesn’t occur to them that people outside of their world have no idea what they just said!

If you too have an intimate association with this disease, then you can STOP READING HERE, but after 3 different conversations with friends and family members this week, it occurred to me that a lot of people have questions about how I got this and why I am getting 3 different forms of treatment (surgery, radiation and chemo) and why all 3 together STILL might not work . . . and some more specific questions too, like why they only took out my right tonsil and why I have to have my wisdom tooth out (YES, I’m having it out-tomorrow in fact) before radiation. So, here goes . . .Tammy’s Cancer Primer. Everthing you need to know about the torturous things they are going to do to me next and why . . . .

What is cancer anyway?

As I explained to Charlie, Cancer cells are basically like misbehaving children who no longer follow the rules that their parents set out for them—for some reason, they start to grow out of control. There are many kinds of cancer, but they all start because of out-of-control growth of abnormal cells.
Normal body cells grow, divide, and die just as they are programmed to do. Cancer cells don’t do that--they resist dying, and they don’t grow up into normal adult cells and do what they are told. Instead they act like teenagers forever, growing and dividing and wreaking havoc wherever they go. And that is another thing they do . . .they go places. Normal tonsil cells stay in the tonsil, just like normal breast cells stay in the breast. Cancer cells though (because they are damaged and dividing like crazy and acting like teenagers) have the ability to break off, sneak out for the evening and wind up in other places. Scarier still is that they have at least 3 ways to hitch a ride. They can 1) invade other tissues—like the cells from my tonsil just growing into the cells on my tongue –weird. 2) some of them can travel into the blood stream and 3) still others can travel through the lymph system.

Oh, yeah, the lymph system, what does that do again?

The lymphatic system is a system of thin tubes that runs throughout the body. These tubes are called 'lymph vessels' or 'lymphatic vessels'.
The lymphatic system is like the blood circulation– the tubes branch through all parts of the body like the arteries and veins that carry blood. But the lymphatic system carries a colorless liquid called 'lymph'. Lymph is a clear fluid that circulates around the body tissues. It contains a high number of lymphocytes (white blood cells). Plasma leaks out of the capillaries to surround and bathe the body tissues. This then drains into the lymph vessels. The lymph system does four basic things. It 1) drains fluid back into the blood steam from the tissues. 2) filters lymph 3) filters blood and 4) fights infection. When it comes to cancer it is the draining and the filtering of ‘lymph’ that matters.

As the blood circulates, fluid leaks out from the blood vessels into the body tissues. This fluid is important because it carries food to the cells and waste products back to the bloodstream. The leaked fluid drains into the lymph vessels. It is carried through the lymph vessels to the base of the neck where it is emptied back into the bloodstream. This circulation of fluid through the body goes on all the time. The lymph nodes filter the lymph fluid as it passes through. White blood cells attack any bacteria or viruses they find in the lymph as it flows through the lymph nodes. If cancer cells break away from a tumor, they often become stuck in the nearest lymph nodes. This is why doctors check the lymph nodes first when they are working out how far a cancer has grown or spread. This is because there is a natural circulation of tissue fluid from the organs through the lymphatic system. (This is not the same as having a cancer of the lymphatic system, such as lymphomas—that is a whole other story.)

Cancers also often spread to the lungs and the liver and less often to the brain and the bone. If you think about it, it makes sense from a blood flow perspective. This is because the blood from most parts of the body flows back to the heart and then to the lungs before it goes to any other organ. Cancer cells that have found their way into the bloodstream can get stuck in the tiny capillaries of the lungs. Also, many types of cancer can spread to the liver. It is most likely to occur with cancers of the digestive system because the blood from the digestive system circulates through the liver before it goes back to the heart. (This is why they were worried about weird stuff showing up on my liver scan but also pretty confident that it was nothing because it would be odd for it to have spread to the liver before the lungs when it started in the tonsil.) The spread of certain cancers to the bone and the brain is harder to understand. There is lots of research going on to try and explain why and how some cancers travel there.

My particular cancer.

So, MY cancer started in the tonsil and then traveled via invasion to my tongue AND also, by breaking off and being filtered into the lymph nodes on the right side of my neck. Dr Kamerer cut out all of it that he could see from my right tonsil and on the base of my tongue –he could actually see an area that looked “wrong” and he could easily see the 2 swollen lymph nodes but there was no way to know if there were still a few (or a lot) of microscopic cancer cells floating around in there that could not be seen. He took out part of my thyroid because it "lit up" on the scan . . .it turned out to be nothing (which was awesome!) but even before we knew that, we knew that if there was cancer there, it was a 2nd cancer--because cancer of the tonsil does not travel to the thyroid. He also took our 29 lymph nodes in my neck and only found cancerous cells in 2 of them. That is great news. But still, there is no way to be certain that there aren’t 1 or 2 misbehaving teenagers still out on their lethal joy ride. Hence, the radiation, directed specifically at the areas where we know there were cancer cells lurking around, and the chemo---poison for ALL the cells in my body—to take care of any really wild children who may have floated off to other places or to weaken those cells enough so that the radiation can kill them. That, in a nutshell, is why I am getting all 3 forms of treatment.

Lastly, the answers to the questions that I get asked most often: 1) we need to pull the tooth because radiation destroys all kinds of things close to the field, like salivary glands and blood flow to the jaw. This means that if I had a tooth issue in the future (even 10 years from now) it would be MUCH more difficult for it to heal and have a much higher risk of infection. 2) we need to put in the feeding tube because they are radiating my throat and will effectively turn it into one big oozing burn for about 8-12 weeks. The feeding tube will allow me to get nutrients (and pain meds) even if my throat is way too swollen/sore/raw/painful to swallow. Ever had a bad burn? Remember what that feels like? NO FUN! We will keep the tube in for at least a month after treatment is over. 3) the left tonsil did not need to come out because the drainage was to the lymph nodes on the right. Drainage from the left tonsil would have gone to the lymph nodes on the left. We left that tonsil alone for better healing and quicker recovery and because we will radiate it and hit it with chemo anyway.

I think the only thing I didn’t touch on is how I got IT and why. Short answer: who knows? I have none of the 4 main risk factors for this kind of cancer: smoker, heavy drinker, male, over the age of 55. Though some cancers have a genetic link, most researchers believe that the vast majority of cancers are triggered by something environmental, (something outside the body.) We obviously know that substances like tobacco and asbestos, and the sun’s own rays, can either damage the cells, or trigger already damaged ones to begin dividing. There is also a lot of research going on now regarding many viruses that can do the same thing. We know too, that the older a person gets, the more likely they are to get cancer—fact is, it takes a long time (years and years in many cases) for the abnormal cells to mutate into cancer cells that can do a lot of damage, so the older you get the more time you have given the cells to misbehave.

In reality, it is completely unlikely that we will ever know the how or the why of my particular cancer but it would be pretty cool if someday they could figure it out for ALL of them, not just this one. (Then we could really think about prevention, and not just treatment.)

Here is a sobering thought to close with. I bet these numbers will surprise you. They are, unfortunately, VERY real. 1 in 4 of us will die from cancer. (Please just know that I don't intend be that "1", so I'm not helping your odds any!) 1 out of every 2 men (yep, half!) will get cancer in their lifetime, and nearly one in every 3 women. So while it seems shocking and bizarre that I should have this thing, it isn’t really that uncommon , and to me, that is the most shocking and bizarre thing of all. So do me a favor, keep me in your prayers, hug your kids, tell them that your love them and don’t put off the things you always wanted to do. For right now, you’ve got time. Don’t squander it.