My two year anniversary was 8/29/99. Just like last year, I would like to put down some thoughts and feelings about how things have gone - and are going . . .

• For this milestone doctor visit, the docs told me that the chance of recurrence of my original primary is less than 5%. Probably more like 0%. For that I am thankful! Apparently, the reason for continuous monitoring from here on out (i.e., the rest of my life) is to watch for new primaries. My understanding is that whatever characteristic of my physiology that allowed this to happen in the first place, could be a factor in another new occurrence.

• I asked what kind of long term issues I may be facing from here on out. For the most part, none - other than those that I am already familiar with! There is a possibility that I could have thyroid problems at some point, but again, I was aware of that going into this mess.

  The side effects from the radiation treatments will be constant nagging issues:

  • Stiffening of muscle and skin due to scar tissue. (Constant stretching excercises for my neck to maintain movement laterally and vertically)

  • Dry mouth. (This is manageable with minor inconvenience)

  • Trismus that limits how wide my mouth will open. (I still have to constantly excercise my jaw muscles in order to keep things working satisfactorily)

  • Swallowing. It is still a time cosuming ordeal to eat a meal, although nothing like it was shortly after treatment. I can generally eat a meal and finish it only 15 minutes after everyone else has finished. This is still improving slowly - even after two years! In the ACOR Head and Neck Digest we have made jokes about all the hocking and spitting sounds you tend to make after going through this. It can be pretty disgusting sometimes. Nasal drainage just seems to get stuck - you can't swallow it, it comes back only for you to try and swallow it again - gross. Crackers, cookies, dry bread, meats - all take careful planning to get down without trouble. I have to take a sip of water (or something wet!) with almost every bite in order to get it down. Taking daily vitamins and supplements - has to be done along with mealtime bites, or they get stuck in my throat. I have to say that even though this may sound bad - I feel fortunate to even be able to swallow. Some folks require a feeding tube for sustenance.

  As for remaining side effects from the surgery:

  • Movement. I will never regain full use of my left arm, due to the removal of the muscle on my left shoulder. As I have mentioned several times throughout this web site, this can be very frustrating! I just try to live with it, and not do things that I know I can't do. I have pretty good vertical movement of my left arm, but there is one position when my arm is at about 90 degrees, where things sort of "catch." Once past that, I can move my arm pretty much where ever I want to. Lifting is another story, however.

  • Numbness. The feeling in my left neck is still pretty much gone. No nerve endings there. It is dead to the touch. However - I have been getting really strange tingling sensations around my incision scar for the last 2-3 months. It comes and goes. The doc says it could be the nerves trying to reestablish themselves. It will never be like it was, unfortunately. As compared to this time last year - I have regained more feeling in my shoulder area, almost up to the base of my neck. Nerves regenerate REAL slowly, so we'll see how it goes in the future.

  • Appearance. Ah, here is one that several people have expressed concern over. I have seen some pictures of me that were taken since surgery. Depending on the lighting, the surgery site is not that noticeable. If the light is good - there is a definite difference between the left and right sides of my neck! The incision is noticeable, but not glaring. Vacation sun, and time at the pool this summer have helped blend it in with the skin on my neck. The scar is still more white than the surrounding skin. The main thing that is noticeable to me, is the difference in the skin texture - the incision side (not having the lymph nodes or muscle to soften the skin) looks more harsh. The underlying tendon structure is much more apparent, and the lack of mass is obvious as well. I still get some stares, but I don't let it bother me. I sometimes have some fun with it, and tell people it was a shark attack or something . . . amazing how cool that is to a kid.

  • Tightness. Yep - the skin on the surgery side is really tight. Now, the surgeon will tell me that it is due to the radiation. Funny thing is, the day after surgery is when it became an issue. And I had all my radiation complete prior to surgery. All I know is that things are still tight on that side of my neck. I have to stretch my neck as far as I can without it hurting - several times a day, in order to keep it reasonably comfortable. Massaging helps, but too much pressure can hurt. That whole side of my neck is very hard and taut. Sigh . . . Not very good for the love life either . . .

  • General shoulder and back ache. This is something that I hear about from everyone that goes through this. I think it is due to the muscles that try to compensate for the loss of the sternocleidomastoid muscle. This really puts a strain on the left shoulder (in my case). One fellow described the feeling as if the shoulder blade is "floating." That is a good description. It pokes out pretty good when when you try to lift that arm around a bit. Arrgghh.

That about covers things at this point for me. As for how all this has affected my "real" life over the past year, I will jot down some comments:

This time of year always seems to be busy, what with birthdays, summer activities, work, and getting ready for a new school year. This year is no different. And I guess that means things are pretty much back to normal in many ways. That is good. With this good checkup, I feel even more confident that life will be as enjoyable as it should be! The fact that cancer has been an issue, only serves to make me appreciate more the small things in life, that I know I would not have gived second thought to in my "prior life." Example: A recent trip to Michigan to visit friends was very enjoyable - I took the kids on a rather long walk to the local schoolyard to play. There was a huge field we had to cross, and while walking, the combination of the wind in my face, the beautiful blue sky, trimmed with pastel pinks and lavenders of the impending sunset, the smell of summer (that smell factor is a powerful sense these days), all came together to create what I call a "lucid moment." It was like I was on the edge of understanding something humans are not supposed to understand. It sounds a bit deep, but I really felt a part of the world around me in a way that rarely happens. I think it might be due to the fact that I let myself open up to the vastness that is right there in front of us all. Just waiting to be noticed and appreciated - but too often overlooked because we are so engrossed in the details of our daily lives (and I am just as guilty of this as everyone else). It reminded me of the way I felt when I was in my early twenties, after reading "The Adventures of Don Juan." Hehe.

Other aspects of life are returning to normal as well. Just like the summer two years ago when I was diagnosed, I did another PC build project. I was sort of reticent about doing it, for fear that some little tweak I might make on the system would set off some genetic trigger that would result in another cancer! What a weird concept. But, it is strange the things (some of which border on superstitious!) that go through our minds. Needless to say, I built a new PC (and am typing this on it now), and installed a home network so my wife and daughter can be happy when I am busy doing this kind of stuff. All this, and getting set up with cable modem access to the net made for a great week! Hey - it doesn't take much for me . . . 8-)

These two examples are actually intended to provide hope for visitors that things can, and will, return to some semblance of normality. Life can go on after cancer. And in fact, be better in many ways. I know that one of the things I look forward to most, is nightly prayers with my 7 yr. old daughter. We routinely pray not only for our family's health and safety, giving thanks for what God has provided, but all the others out there that are going through this now. Our prayer is that you will be touched by God's healing hand. After all, he made us - so he can fix us. That is a pretty simple concept. But, I think we need to understand that we might not always agree with how God decides to handle things. I know that I have lost several close people to cancer, and even visitors to this site. One in particular really upset me. So I am dedicating this two year anniversary summary to Louisa. Devon - we prayed hard on this one, but God works in mysterious ways - some of which we just can't understand. God bless you and the baby . . .

Well, I think that will do for now. I will continue to plod along, taking note of the good things in life, trying to keep a positive attitude, and updating this site when something comes along that looks good. Hang tough, folks!

Barry