Thursday, July 31, 2008

The New Norm

Since completing the last of the Chemo and Radiation treatments, I have heard of and met a lot of people with head and neck cancer who have had their life changed since the treatment. There are two things that remain constant through out the stories I have gathered. One is that everyone can respond to the treatments differently. The second,..... things are never exactly the same as they once were.

The main thing that has been in my own mind is......when can things get back to normal for me again? After talking to many, the best answer I have for that is, what is going to be the New Normal and how soon can you accept that?

The New Norm is exactly as it implies. What once was, is no longer after radiation. The ones who do regain their taste after an average time of one year, will never have the same intensity. I have talked to some who after 4 years, have never regained all their taste back and more than likely, never will. What applies to you depends on your particular cancer, how advanced it is and how the radiation affects you. That is just a start of the criteria that causes the various effects. My job as a patient is not to give the long list of causes and effects of the squamous cell. It is only to present the basics so that you might be guided to ask more intelligent questions of your Doctor. This is the way he or she can aid you in understanding your situation better.

At this time, I await what might be MY new norm. My neck healed really greatly. I have no complaints there. My outside skin took a hit and burned, but did heal within 2 weeks and now one month later, the new pink skin is turning more a normal color. What has me concerned is my tongue. The radiation was not so nice to it as was with my neck. I have no taste buds left. That's right,...NONE left! Smooth as a newborn baby's butt. So how long before I get taste buds and start to regain my taste? No one seems to have that answer. I am using my own sense of logic for this one. The inside of the mouth takes a long time to heal anyway. So I expect at least 6 months before my taste buds return. That assumes they do and if they do, will I regain all of them again? Then I face the fact of what tastes will I regain and to what intensity?

They Doctors are afraid to give any answers to these type of questions because of the variant with patients and how each can respond so differently. So we rely on others who have been though similar situations and ask of the experiences. That is one way to attempt to gaze into the proverbial crystal ball. The best way is not to attempt to predict the future, but to write down what does happen and hope that fate shall be kind to you. In my case I figure that in about 6 months I should be able to tell whether I should be further excited or encouraged for a decent recovery. In one year I should know what may be, my New Norm.

I would expect that within 3 years, 4 at most, I will be forced to accept what ever my New Norm is at that time. I hope I can report good news that tells of regaining at least 95 percent of the sense back to you and still be cancer free. But what ever the case, it is better than the alternative. Sure, I complain at times and get tired of dealing with the harsh reality that life has thrown at me! But this also is part of dealing with the New Norm. It is part of the long time consuming process that head and neck cancer patients deal with. In reality, I should thank God I am still alive right now. I should thank God if I am still here to report such things in 3-5 years down the road. It is your attitude that can change the statistical survival rate.

So once you find what your New Norm is, accept it, embrace it and thank God you have normalcy at all. Will I be able to practice what I so cleverly and expertly preach? I do not know. It does seem pretty far out there I admit. But at least I have a goal. It may be hard, yet still obtainable. I am sure that eventually, I will conquer this one last goal as well.

Wednesday, July 2, 2008

Recovering from Oral Cancer

What is it like to have had oral cancer and what about the recovery? Why is it seldom caught in the early stages? Why is my loved one so darn irritable when I try to be nice? It is SO DARN Frustrating! WHY,WHY,WHY?

Yes, it is frustrating. It is frustrating on those who have the disease and on those who are friends and family of those who are afflicted. Truth is, one can never truly understand until they go through it. GOD FORBID! But as one who is going through it, I shall attempt to paint a picture of understanding.

We start off thinking we have a cold or strep throat, then we get the big boom lowered on us. YOU HAVE CANCER! One could relate this as the Big Boom Theory. I say this because, the big boom keeps happening. With every time we hook up to receive our chemotherapy treatment. Every time we hear that radiation machine zap us with another treatment. Every time we see our self in the mirror after losing 45 pounds and not having it to spare. Every time we hook up to the feeding tube because you can no longer eat by mouth.

Most of us get sick, feel better in a few days, a couple of weeks at most and we forget about the pain and sickness we had and move on. A cold, the flu, even having a surgery we tend to forget about. This disease is one that does not allow such a thing. It does not take days or weeks to get over. It takes months and years to get past. The recovery is very slow! So asking things like, how are you feeling?, get tiring. It is frustrating to hear that time and time again. People do not listen. I can tell them all of this and still, I get asked, are you feeling better this week vs. last week? You look a whole lot better. I say to you, BULL!

I still feel like crap. I look like crap and I have a very long way to go. I MUST deal with this on a day by day basis. As a patient I must take and deal with this one day at a time. You must do the same thing. This is the best way to help us and yourself.

Get rid of the pity faces. We get enough of that at the store when we go to shop for food and clothes. Treat us normally. We will let you know if we need anything. When we do need something, help us right away. We do not want to hear, ok, I will help you in the morning. My son is about the best at this. He gets it! at 17 years old, he gets it! My Mom, my sister, my friends, they all try very hard to understand. But they don't and I doubt they ever will. And that, as hard as it is, it is ok.

My son, acts normally. He still goes to work, visits his friends and asks me for gas money on occasion. But He always lets me know what and where he is going. This offers me the opportunity to ask him for help if I need it. If I do ask him, he responds right then and there! Once done, he continues on with everyday functions. When he takes me to the store, He knows I do not have all my strength yet so I get dropped off at the door and picked up at the door without having to ask. He knows! He does not have to ask how I am doing, he knows. He watches and understands. I do not know HOW he does it, but he does. I guess he figures, it is not important how I am doing every damn day. He is correct. What matters is the here and now, not yesterday or tomorrow. But, right now, this second is what matters.

We are always trading one pain or one freustration for another. We may get rid of one, but develope another that replaces the one we got rid of yesterday. Hence the reason we take things one day at a time. We get tired, we get upset, we do not like having to deal with this as much as we must. But we do it. It is a very slow process, but we deal with it. One pain at a time, one symptom at a time. One prayer at a time. One day at a time!