One Year - I Made It !!!
The day I wrote this was Labor Day, 1998. September 6th. A year ago today I was recovering from my first surgery - removal of my left tonsil, which was my primary site. Today, however, was wonderful. Our family got together, had a relaxing day, nice dinner together, beautiful weather. And no cancer . . . A much, much lighter holiday than last year! The following are some thoughts and feelings as I celebrate my first year without cancer.
My oldest daughter, Crystal, came to visit for a couple of days. Great to see her. She brought the youngest daughter (Leah) a belated birthday gift (didn't matter to Leah - she's always glad to open presents...). Leah just turned 7 on 9/2. I remember last years' birthday celebration... it was extremely overwrought with dark feelings of unknown, as I had just been diagnosed a few days before! It was wonderful to not have those worries this year! And it is wonderful to be here to enjoy all the little pleasures of watching her grow, start a new school year, smile, and just enjoy life! What an indescribable joy.
This week I have done a lot of thinking about all that has happened in the last year - and where I am, and where I am headed. First of all, I am thrilled to be alive! I can't express how great it feels to go outside and feel the warm sun on my skin, take in a deep breath of air, and just enjoy something as simple as a breeze! Yes, a breeze! Or a flower. Or marvel at my daughter's turtles. Or any number of "simple" things. Really - it doesn't take much! A cancer diagnosis will do that for you . . . I suppose that I realize that life is indeed a blessing, a gift, and the world around me goes along with that. I don't think I could have ever appreciated the little things as much, had I not got cancer. That's certainly not to say that I would be mad had I not had it! I'd give almost anything to have my old body back! But, I must admit that there seem to be some perks that have come along with getting, and dealing with the disease.
Last year, just before my diagnosis, I had just upgraded my computer (I am quite a computer hobbyist). I had just built a new system with what was then the lastest CPU technology. I felt great. Then boom! Cancer. And that changed everything. Computers didn't mean anything any more - other than a means of finding information about my disease (most of which wasn't very encouraging!). Well, this year on the anniversary of my original diagnosis, I upgraded again! I feel like I've got the upper hand on the cancer, but I'll never stay ahead of the technology! My P2, 333 is already behind! But you know what? I don't care - it doesn't bug me like it used to! I know I can mess around with it in time. And in the mean time, life is great anyway!
Our family went to my wife's annual company picnic yesterday. It was held at Coney Island, here in Cinti. I have many memories as a child at Coney. Back then, it was one of the top amusement parks in the midwest. Great rollercoasters. I remember riding the Shooting Star rollercoaster (one of the old wooden, rickety jobs!) 52 times straight! Back then they didn't make you get off after every ride . . . Now, the park is a small place with just a few kid's rides and the old Sunlight (swimming) Pool. The big amusement park in the area now is King's Island. But, many of us in the midwest that are old enough to remember the heyday of Coney, will never forget it. And those memories were especially poignant this weekend, as I took Leah on some of those rides, and went swimming with her in Sunlight Pool. It's sort of like the next generation - and I can see myself when I was a kid, in Leah's eyes. It was great.
On one hand, I have a 7 yr. old starting 2nd grade. It's so wonderful to see her grow and learn. Little, by little. She's a great reader. We're very proud of her. But, on the other hand, I have a daughter starting college this fall, too! Amber will be studying photography at a school in Dayton. And, it doesn't seem that long ago that she was in Leah's shoes! So many contrasts . . . So many emotions . . .
My whole point with these first comments is that life has many good and bad moments. For me, being diagnosed with cancer was my worst. But, even since that day a year ago, there have been many wonderful things happen. And to be here to remember them is wonderful in and of itself! There has been a lot of press over the last week about the one year anniversary of the death of Princess Diana. I remember when she died, because I was wrestling with what I was going to do about having cancer, when I heard the news. And I thought to myself - even though I have cancer, I made it longer than Princess Di did . . . And I have a lot of respect for her and all she did for those much less fortunate than her. We just never know what's going to happen - and when! We absolutely cannot predict. We just have to take life a day at a time, and try and plan for the future as though we will be around for a normal lifetime. And hopefully we will . . .
As for me nowadays, well, like I've said over the past couple of months, I am very glad to be alive. I thank all the medical professionals that have helped me along the way, and that continue to provide support. And I thank the wonderful people at the Wellness Community - in my support group. They have helped me cope in an enormous, indescribable way. They have helped me keep cancer in perspective, and not let it get the best of me when I felt low (and every cancer patient will feel low at times!). There is not a person alive that knows how a cancer patient feels, unless he/she has been there him/herself. It's very similar to war veterans. We have made that analogy many times in our group. It is, after all, a vicious battle for life, that involves your body, mind, emotions, will, family, and every ounce of energy you can muster!
As for general health issues, and dealing with side effects these days, I'll mention the issues I have, and try to convey their magnitude in my day-to-day life. I've talked about these over the past year in some form or another. If you are going through this, I pray that you will be encouraged, because you can make it! Keep a positive attitude - that's very important . . .
The incision on my neck has healed nicely. There is still quite a scar (and always will be, I suspect), but the summer sun has helped blend it into the surrounding skin. Every once in a while, I catch someone staring - I know it's probably just a matter of being curious. I've seen folks with scars, and wondered what their story was - even moreso since I have a story of my own. But it is just another reminder . . .
I have pretty good mobility of neck movement. I still have some restriction when turning my head to the far right, though. The skin on my neck feels tight. The docs say to keep stretching it - if I don't continue to do that, the skin will tighten up again. So I stretch my neck as far up, and to the right as I can, daily (sometimes in the car, etc).
The front of my throat feels like it projects out farther than it did pre-cancer. To touch it, it feels very hard and bumpy, due to the underlying structures. I think that is due to the radiation, and in some part due to the removed soft tissue (lymph glands, muscle, etc.). The skin on the surgery side of my neck is as my surgeon said it would be - a woody texture. Not like a piece of hickory firewood or anything, but definitely hard to touch. That sometimes bothers me. Not so much in terms of discomfort, but because it doesn't feel particularly sensuous, if you know what I mean . . .
I still have the L'Hermittes syndrome symptoms (say that 10 times real fast!). If I bend my head down, I still get the numbing sensation down my spine. It is not as bad as it was when it first became an issue. I think it will eventually disappear. My rad-onc says give it a year. So I will - after all, what choice do I have? Hehe.
I also still have "dry mouth" from the radiation treatments. This is something that I will have to live with. I am not taking Salagen, or anything for it. I just keep something to drink handy. My dentist says avoid sodas, or any high sugar content drinks - bad for my teeth. I tend to like water anyway. Or iced tea. I can generate saliva, but not in great quantities. For instance, in the mornings when I wake up, I am dry, but not parched or stuck together as I was in the early months just after radiation. But, after my first bite of food for the day, I need something to drink immediately, unless I want to chew on that bite for the next 20 minutes! It's merely and adjustment that has to be made. It's not impossible, or even that difficult, really. But it is a fact. So, I drink (really just sip) water frequently throughout the day. And things are fine. For the most part, the dryest part is the back of my throat. Swallowing is affected the most. Got to wash anything I try to eat down with water, or a drink.
I remember when I was first diagnosed, I asked my surgeon for references of people that had gone through this. He gave me the name of a fellow in California that went through the exact thing I was in for. I called him, and asked him some questions about his experience. He told me it was no walk in the park, but that it is manageable. When I asked about side effects, one thing he mentioned was a sort of nasal drainage that constantly bothered him. I think I know, at least in part, what he was talking about now. I don't think my situation is as bad as he indicated he was, but I do tend to have some periodic drainage going on in the back of my nasal area. It sort of comes and goes though. Nothing really serious. Just annoying - and my wife doesn't appreciate the sounds I make when I am trying to clear it out! (sorry dear)
One thing I consider to be a major inconvenience is the limited use of my left shoulder. I have tried to stretch it and exercise it with movements to it's maximum limits. But, I still have limitations as to how far I can move my left arm. And there are certain moves I simply cannot make any more. That is frustrating. It sort of gets into the area of "not feeling like a complete man." I know it's ridiculous, but that's how it feels sometimes. The muscles are gone, and I can't do a thing about it now. I am trying to get muscles around that area to compensate, and I think they are doing a pretty good job of it, but things will never be the same. Something else that just has to be accepted . . .
As for where I am headed now that a year has come and gone, I am not sure . . . Anyone diagnosed with cancer will always live life looking over his/her shoulder. Always. Even on the best days, when things are going so well that you may even forget the events of the recent past, it can slip into your thoughts and corrupt your day. It's every cancer patient's nightmare:
Recurrence
That's the one word that strikes fear in the mind, heart, and subconcious of all of us. It's something that we don't want to even consider. It's something that we don't know if we could handle - again. What would we do!??? Those that I know that have had recurrences say many things about how it feels. One interesting comment was that it makes them feel like they've somehow failed. I can understand that. You go along, thinking all is well. You have the dragon slain. Or so you think. Then, wham! It's back. But you know what? Those folks also say that at least they know what to expect, this time. The process is not quite so much of an unknown. And I think that would tend to allow you to focus more on beating it. Regardless - it's a very scary prospect!
Well, I think that about covers it, without going into more philosophical realms. And you do get a lot of that going on after getting, and dealing with cancer! I always wondered had I done something differently in my life, would I still have gotten cancer? What if I would have lived in a different house? Worked at a different job? Not done some of the stupid things I did as an immortal youth? Not lived with smokers? And on and on . . . Bottom line: I am here. Now. And I can't change the past. So I have to move ahead. Into the future. One step at a time. With God's help, I pray it will be long journey . . .
Take care - and good luck to you!
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