Larry's Journal
March 02, 2002
Two weeks ago I was laying in a hospital bed, in a fair amount of discomfort, trying to make a cup of beef broth seem like a meal. A lot has happened since then, most of it very good, but some that I guess I just need accept. I am not one who accepts easily!
On the positive side, I remain smoke free. It is hard to keep it that way, perhaps the hardest thing I have ever done and my resolve crumbles now and then. It does not get easier every day; if anything it seems worse today than it was a week ago. In fact, today I coveted a long cigarette butt sticking out of a sand ashtray. It is very possible that only the lack of fire saved me from stooping that low. I now power-walk in the bowels of my office building's subterranean parking garage. A brisk quarter mile sucking exhaust fumes when I really want tobacco…one wonders about the trade-off in carcinogens in the air?
The patch clearly helps…I know when I am due to change it. The Zyban, I am not sure. It is supposed to be an antidepressant. If that is the case, without it I would surely be a suicide by now. I am often lower than a snake's belly.
You will, I am sure, be very glad to hear that my digestive system is pretty much back on track. I think I may have been too graphic about some of my reports in that venue, and apologize to those who found it more information than they really wanted. Under that same heading, I find my enhanced sense of smell to be a major disadvantage when I am seated in the smallest room of my home. This is new, I think, and I sure hope it is temporary. I'm hoping this passes very soon. If it does not, we definitely need a higher volume exhaust fan in the bath.
My tongue is no longer sore. It is still pegged to the floor of my mouth by a few thick stitches that have yet to dissolve. Small fronds of thin sutures flutter off the end of my tongue…if I were to whistle I'd probably resemble one of those party horns. My jaw and neck are another story.
My left jawbone, from chin to ear, feels as though someone punches me every night in my sleep. It is sore to the touch, like an old bruise. The skin of my neck surrounding the incision directly below the jaw is numb. I feel nearly nothing from jaw to collarbone. It is very scary to shave that in the mornings, I think I could cut my throat and not know it. Below the "dead zone" of my collarbone, feels like a fresh burn or bee sting. This tender area is about six inches long and an inch wide. I do not know when I will be able to tolerate a starched shirt and tie again. Shirt and tie are mandatory in my line of work.
I am back at work, but very self-conscious about my speech. To my ear, I sound mush-mouthed and tongue-tied or drunk. None of these are too good for a sales person in commercial real estate! I am uncomfortable enough about my voice to cringe when my phone rings…I should be ecstatic to hear it in my line of work, it's an opportunity to earn a living. I have learned that my insurance will pay for up to 40 therapy sessions and have asked the doc to write an order for an evaluation and therapy.
My appetite is back and I am able to eat nearly anything I want. My favorite snack, peanuts, is a bit of a challenge, but as long as the little buggers don't get stuck under my tongue, we're fine. My weight had dropped from 197 to187 through the recovery, and I am trying to hold it there. My pants fit better then, you see.
I am alive, I am healthy, and I am cancer-free. None of my bitching takes away from any of these three. However, while I am still withdrawing from nicotine, I reserve the right to whine or snarl. I apologize to Kay on a regular basis.
March 13, 2002
An anomaly in the Gregorian calendar finds us precisely four weeks, which happens to be one calendar month beyond my surgery. March 13 follows 4 Wednesdays subsequent to February 13…an interesting fact.
My session with the speech therapists (yes, they double-teamed me) turned into a "shut up and give it time, you sound better than you think you do." I am mollified if nothing else, but do admit that as the swelling goes down, my voice improves. I also find that when I take time to think about my words, slow my rate and over-enunciate, my voice is most impressive. Have I mentioned my lack of patience? Yes…. I still sound pretty "sloppy" most of the time.
I also find I tire quickly after talking too much. My tongue, jaw and cheeks ache after a long meeting (many of those lately) or a sales presentation (a few of those as well). Originally the doctor had told me to plan on 6-8 weeks recuperation. I returned to work in less than two weeks. It is now just four…I should not be surprised that I am tired. Shucks, I only worked an 11-hour day today. A breakfast meeting at 7 started my day with a 5 PM staff meeting (yes, you still have a job <today> ladies) as the ending bookend.
On top of that, I'm currently averaging about 3 hours of sleep a night. On Saturday morning the company's owner told me he was firing my boss and I would take over "in the interim". I got a 25% pay increase and 6-9 months to save the job of four people…one of them me. I spent today hugging one person goodbye and trying to hold two others (plus myself) together. My arms are tired too…and a bit shaky.
As I took my two badly needed strolls around the block today, passing Walgreen's without stopping off for a pack of death and a book of matches got very difficult. I think I need a different route, and will start that tomorrow. I was dying for a smoke at several points today, but won't die of one.
I am now down to a 14-Mg patch nearly ready to discard the Zyban…and amazingly smoke-free. Had you told me a year ago that I would quit overnight and remain a non-smoker, I would have laughed my posterior loose. Fear is one Hell of a motivator, and I am living proof. My secret is the post-op pictures and the disappointment it would cause in Kay if I smoke again.
Each of the three times I previously quit, failed for one reason. I did not see enough benefit of quitting. Food did not taste that much better (still true). I must have an asbestos palate. Yes, I am aware my sense of smell has improved, with mixed results as noted before. I breathe better and snore less, which Kay celebrates. I have more energy and wind (when I am sleeping well) and do admit to being aware of positive changes. But not enough to have quit if I were not afraid of a very recent and real threat of death from the things I still crave.
Two new brothers-in-arms battling both cancer and the causal cigarette addiction wrote me today. One is 5 years smokeless, the other still trying to get through a day. The three of us understand the depth of addiction we suffer, acknowledge it and fight on. One is quite healthy, I am guardedly optimistic but the third is facing more biopsies and worry. All of us empathize with the one being biopsied…offer a mention of Mark to whoever you beseech for help when it is needed. I have and will hold constant in that process.
I am back to my "real life" to most extents. I am also advised by a wise woman to forget how things "used to be" and adapt to what they are now. Not settle, adapt, as in overcome. My voice may never cause rapture again…if it ever really did.
Other miscellaneous whines would include my neck and shaving it. Between dead flesh and my new "bellybutton" under my chin, my soap and blades need to become a thing of the past. Each morning it is more of a challenge to scrape the new contours. I'll admit it frightens me and I expect to see blood flowing with each stroke. The indentation under my chin is impossible to get a blade into and beginning to resemble the interior of a flower, sans the sweet smell. I've been shopping for electric razors on the web and am focused on a German model that costs more than my first car. When did that happen? I've grown accustomed to cars costing more than my first house, but electric razors more than cars???
And once the rest of the swelling of my tongue goes down, I'll go back to a full mouth of teeth. You see, it has been 4 weeks and one day since I was able to get my (partial) upper plate in my mouth with any certainty of being able to breathe. Even just one tooth missing makes us resemble a jack o'lantern.
Pity my prospective customers. A fellow who looks like a low-budget pirate with the beginnings of a goat's beard who sounds like he has a mouthful of quarters really thinks they should do business with him. Gee, maybe I should have taken more time off?
Probably not…boredom leads to smoking too.
April7, 2002
The time seems right to close this journal. Unless I have a recurrence of the cancer, I will not write anymore. I hope I never enter this forum again.
My cancer was first suspected on January 9th, not yet 3 months ago. It seems impossible that it was that recent, given what has taken place since then. The days and hours spent waiting for diagnostic results, waiting for the next shoe to drop, waiting for the doctor, waiting for the surgery, waiting for the next round of improvement have all - each and every bloody painful moment - been worth it.
I was a lousy patient at times; a great patient other times and scared out of my wits from the very beginning. Emotionally, I cycled from an even keel to suicidal and back. I am now convinced I am immortal as long as I do not smoke. In the day-to-day maintenance mode, I sometimes find myself thinking I could smoke "just a little" and be fine. That's a devil I dare not pay any heed.
Journalizing this experience has helped me pay attention, I think. Here are some thoughts that stick with me without reviewing my notes.
At one point, I was fully prepared to die. More importantly, I was willing to take my own life to avoid gruesome treatment likely to only lead to a hideous death. I said goodbye to a few people and asked for understanding from the only one who mattered. It was premature. Kay is still stuck with me, which today she may regret.
Luck has a lot to do with my success. I am fortunate enough to see a good dentist often, even though I hate going. That allowed him to catch the tumor very early. Good fortune applies to where I live, less than a mile from a nationally known cancer program. Luck and timing got me seen before the lymphatic system was involved. All current indications are that I am cancer-free and should stay that way. The only way you can have less cancer to deal with than did I is not to be diagnosed at all. But even that very small caliber bullet leaves some nasty scars.
Maybe there is more than just luck involved. My sister and a former co-worker are both pretty devout churchgoers, Lutheran by coincidence. Both of them know me well enough to know I am agnostic leaning towards profanely pagan. Despite that, not just they but their congregations offered up prayer on my behalf. If I decide to get involved with an organized religion in the future, picking a sect will be easy. It's my understanding that most folks try to plea bargain our way to heaven later in life. Oddly, I never got there in my battle with cancer, though I did once ask my late father for help. I actually felt something in return at the very moment I asked. Luck, huh? Maybe, maybe more than luck. I think I want to explore that a bit more.
As to the future, I am on 8-week follow-ups with my ENT. We are on far better terms currently, by the way. I am very aware of the risks of recurrence. That is a bridge best left uncrossed. I will not give it any more thought than the car crash that could kill me tomorrow. I will wear my seatbelt (not smoke) and drive fairly defensively, but I will not let it worry me. I will also be extremely prompt for my check-ups. I am the poster-boy for early detection and know its merits.
Attitude, I think, is everything. Once I bottomed out, I gritted my teeth and took a "bring it on" attitude. I never looked back or sideways. The pivotal moment was the night before surgery when I crumpled up nearly a pack of cigarettes and threw them in the trash. I was panic-stricken, in pain, confused and addle-brained at one time or another subsequently, but never lost my vision of being healthy and smoke-free.
My focus may have made me a bit brusque at times with caregivers, insurance company people and therapists. I did not and do not care. They had a job to do and so did I. Mine was to get me the help they were paid to provide me. We worked it out pretty favorably in the long run, but a few learned not to talk down to me. In fairness, I wrote as many "thank you" letters as I did "screw you" notes. I had some great caregivers.
At the risk of repeating myself for the umpteenth time, I could not have fought so well nor with such purpose without Brian Hill of OCF and my beloved Kay. The first gave me tools, insight, support and a healing forum; the latter gave me reason to persevere. No battle was ever fought with better means and end. Each of them gets my undying gratitude for saving my sorry hide.
A lot was said about my concern for my voice in the early days. It is still not what it once was, and that is my fault. When I speak slowly and thoughtfully, I can probably still give James Earl Jones a run for his money. But I'm Larry Sharp and I'm a bit more excited than Mr. Jones seems to be. I speak much faster and I'm still mush-mouthed when I do. My tongue resembles a mitten-fisted hand hitching a ride. It just has not learned all it's new tricks just yet.
One of my early concerns was that my
speech would cause strangers to think I am stupid.
I meet with strangers professionally and often. At
times,
I know their inability to understand me gets me tuned
out, but I am learning to deal with this. It will
come in time and I practice speaking as I drive.
The forum of this journal has created some new relationships. Just this weekend, I got an e-mail from Marlene, a cancer patient, thanking me for my words here. I'll stay in touch with her and electronically hold her hand as she progresses through radiation. I'll do this as Paul and Anne did for me. Anne and I wonder what has become of Mark. It's a web-based support group…can there be a better use of this medium? Now we need to find a way to be proactive. How can we prevent more need for support?
I'm trying, with no success, to be more involved in OCF on a local level. Brian seems to be resisting creating state chapters and relinquishing control. It's his foundation, he created it, funds it, and runs it…I offer no criticism. I will, however, work locally. I've made the state dental association aware of OCF. They'll run a story about my dentist receiving an OCF lifesaver award in their monthly journal and do a press release at the same time.
In twelve weeks, a lot can happen. I'm hoping to offer more people the benefit of the twelve weeks I've experienced.
Keep an eye out for this journal to become a book. If you or anyone you know is involved in publishing, please get in touch with ldsharp@chorus.net I have not one clue how to get a book published….
Be strong and healthy.
Larry