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.


Anonymous said...

new norms...can be termed "new and improved norms"
With everything that happens in ours lives we have the ability to MAKE it...better.

Wendy S. Harpham, MD said...

When I wrote the first draft of AFTER CANCER during my first remission,the subtitle was YOUR GUIDE BACK TO NORMAL. Within months, the subtitle was changed to reflect my realization that I (and most survivors who have completed treatment) can't and don't go back to their old normal. So I changed the subtitle to A GUIDE TO YOUR NEW LIFE. Underlying all the information and advice about dealing with the medical, practial and emotional issues of recovery and longterm survivorship is the notion of creating a "new normal" that is the best it can be.

We tend to focus on the post-treatment changes and losses that are unpleasant and unwanted. And I'm not minimizing them. But many survivors find value in good things that have come out of the bad, unwanted cancer experience.

Cancer is bad. But survivorship is not all bad. And for some, their life after cancer is in some ways better than before. I've certainly sensed from many of your posts that you appreciate the good things that have come out of a bad situation.

Wishing you strength and hope and you build your new normal.