February 4, 2002
Two weeks ago today I was told I have cancer. Is there a more frightening word? In the passing of those 14 days, I've learned a lot about cancer. I think I have learned more about life and myself. Looking backwards, I realize that there have been rough spots in the road. Some of the speed bumps have been larger than most. I learned more from those than the smooth ride. I was convinced that last year had been the worst, and this was following the same trend. But looking a bit closer, I realize I've missed a lot of the detail.
Since the first of the year, I've begun a new job. It is one I enjoy and I am good at it. My efforts are appreciated, my voice heard. That's refreshing. Yes, I have cancer, but it was caught early. I also have what appears to be great insurance coverage (if a bit anal). I live a mile from a first class cancer facility and team to treat it. More importantly, I have the support of friends and loved ones.
In the past two weeks, I've spent more time with dear friends than I did in several months last year. Yes, it was because of my cancer. That does not matter. They may have wanted to see me before I was too sick or uncomfortable to be with. That does not matter either. As I make those more distant aware of my situation via e-mails pointing at this website, more support rolls in. The website also creates new, distant, likely never-to-be-met, friends whose words give me even more strength. They've been through this and come out the other side. Each hug, phone call and e-mail gives me more spine and resolve.
As I sit here 12 hours from meeting my cancer team, I realize how lucky I am. This outpouring of support validates my existence. The inventory makes me swell with pride. I have a son, with whom I am well pleased; who has a good life, job and family. A clutch of friends ranging from younger than my son to older than myself who have all touched base to wish me well.
Most importantly I am in a relationship all should envy, one I never thought I could have, despite all the speed bumps of the past. What I have done to deserve Kay will always elude me. She will accompany me to the hospital tomorrow (and all the other tomorrows) to "pay attention". I never remember anything, you see. That's our excuse, anyway. She will be there because she wants to be, and she knows I need her to be, but those words were never spoken. They don't need to be
we just know.
This inventory process has been good. It reminds me what is important. It also is the basis for beginning to remake myself to an extent. The renovations will be small, but significant. When tomorrow is over, things will be different.
I will no longer be as frightened, because I will have new knowledge. I will be a cancer patient in treatment, and a model patient at that. Not docile, but highly interactive with the caregivers. Questioning until I understand all that is planned before I agree. I will be aware, in synch and involved with my treatment.
I will also be on my way to being a former smoker. The trial kit of Zyban sits next to me. I will not start any new medications until the specialist gives me his approval, but my days as a smoker are about to be behind me. How could I be more motivated? And regardless of how the tomorrows play out, I will not lose sight of what is important. No one should and it should not take cancer to remind us. Those who care make our life worth living, we just sometimes forget to be aware of that.
February 5, 2002
University of Wisconsin Hospitals is one foreboding place. It is huge, confusing and more than a bit intimidating. The doctor, not an oncologist as originally reported, is a surgical Ear Nose & Throat specialist, also a professor at the University. He demonstrated all the caring and tenderness a frightened patient needed and really put me at ease. If I were not forbidden to mention his name, this would be an endorsement.
My cancer is an early stage T-1, very minor compared to most he sees. He indicated it was probably the youngest and smallest he will treat this year. He complimented my dentist and the oral surgeon for appropriately early diagnosis, making his job far easier and more effective.
Frankly, the only thing about the two hours I spent there today (aside from the waiting!) that was unpleasant was his examination of the back of my tongue and the nasopharynx. To do so, he squirted some vile fluid up my nose and proceeded to use a long flexible optical device down the nose and into my throat. While he was gentle and explained as he went along (which really helped me) it was not something I am keen to do again. He was not too amused when I asked how my hemorrhoids looked. This exam worried me. Too often, especially in smokers, the real damage is out of sight. Having spent 35 years as a heavy smoker, I was very concerned about that, but got a clean bill in this instance. I have dodged both radiation and chemotherapy. It appears the bullet that hit me was of a very small caliber.
After reading some of the stories of others that have offered me support, I almost feel guilty. Only almost though. Mentally, I was so busy doing back-flips of joy; I did not even hear him say he was going to remove the lymph glands
Kay had to reinforce that for me before the doc left the room. He probably thinks I am a dolt
no, he knows that. I had confessed how much and how long I had smoked.
Oddly, he wants me to wait until after the surgery to quit smoking. He is reluctant to add medication or nicotine substitutes (patch or gum) pre-operative. He also did not seem overly impressed by Zyban, referring to it as "simply an antidepressant" at one point. I suspect that the surgery, recovery and the constant reminders I will bear in the form of scars will keep me off the damn weeds anyway. And if not, a distant and dear friend named Anne promises to come kill me herself if I even think about smoking again. Kay would probably beat her to me. I still dread the surgery, I still am frightened of the recovery process, but today was a VERY good day. Even better ones lie on the eastern horizon.
February 7, 2002
Today, my small cancer nearly gave me a heart attack by making my blood pressure go through the roof.
A Smooth Ride
I spent most of yesterday going through the pre-op drill at the hospital. I had meetings with two Nurse Practitioners explaining the operating room process and what to expect, a complete physical, an EKG, chest X-rays, meetings with anesthesiology and an enhanced imaging CT scan of head and neck. I am pleased to report that they kept referring to me as a "healthy, fit young man" which makes me wonder who they normally see, but perhaps I should just smile. The EKG, however, was a thing of great beauty and I may have it framed.
Every person I interacted with was upbeat, comforting and doing all they could to prepare me for tomorrow's surgery. Even the guy who put the spike in my artery a half-hour before they were ready for me (I was early) in radiology, was good at what he did. Why it seemed like a good I idea for me to wander about with that thing hanging out of me, made me wonder, but it was not all bad. I also have no one but myself to blame for going into the hospital in a suit. I'd spent time in the office first, but nearly wore my shirt and tie out dressing and undressing. Kay was with me for the "lecture portion" of the day, but went to work while I wandered and waited through the other four departments. One of our lecturers was a bit more cheerful than she could stand. I take a different approach I am nice to anyone likely to be able to hurt me later. That was yesterday, my attitude did not hold.
Until the wheels came off!
I awoke today knowing I would only have this cancer in me for another 24 hours. I knew I would miss my coffee and cigarette the next morning (not allowed pre-op), but felt it was well worth it. I also knew I could count on being sedated pretty heavily by 7:30 and the anesthesiologist had noted my chart to add some caffeine to my IV to avoid the headaches. She might have been joking, but I was pretty impressed!
The morning was spent tying up loose ends while I waited for the OR staff to call with my surgery time. Got e-mails off to all open issues letting them know who to contact while I was out of the loop. Sent a memo to all my in-house clients with the same info, and cleared my decks for the recuperative time. Got my ducks in a row, and good to go.
When I finished my noon appointment, it was 12:30. The hospitals instruction package had indicated I should call OR scheduling if I had not heard from them by noon. I had not, so rang them up cheerfully, only to be told I was not scheduled. When I asked the equivalent of "Huh?" they referred me to the doc.
Two voice mails and an e-mail finally got me a return call. It seems the doc and OR could not make their schedules gel. They knew this on Wednesday afternoon. No one seemed to find it appropriate to let me know. Their excuse was that they wanted to be sure they had a new (probably) firm time before they called me.
I'll confess to going slightly postal. I wrote the good Doctor a polite but hot e-mail. I wish I could quote, but I forgot to forward the damn thing to this computer. It may be included later. I then called my PCP and referring oral surgeon for a new referral. They both suggested two ENT's. Dr. B's name was on both lists. Quickly calling his office, I explained my plight to the receptionist, asking if she thought Dr. B would be able to get me in surgery soon. She was most helpful and promised to have his nurse call me back.
When she did, I had visions of a whiskbroom. I was advised that if it were her father or husband, she would want my existing ENT to do the work. She went on to say that he was the ONLY ENT in town that did oral cancer surgery. I was so stunned by this that I asked her to repeat it. She did. My tongue flashed before my eyes. I had just pissed off the only guy who could save me? Jesus, Jerry & Mona!
I walked around the block, smoked a cigarette and reviewed my options. Back at my desk, I surfed up the University of Wisconsin Hospital staff registry, only to find that 3 other ENT's specialized in head and cancer surgery. An old Seinfeld episode came to mind - the one where Elaine discovers she is on the "difficult patient" list. The show ends with her trying to get treated for a rash by a veterinarian in Ohio or someplace. One wonders if such a database may not exist. The hospitals here share a common patient database with all the clinics.
By five o'clock, I still have not heard from the doc. As I get into my car, my cell phone rings. It is Kay wanting me to know the doc called at home (oddly, not the number I had left) and they had a nice chat. He told her we were good to go for surgery on Wednesday. A few minutes later when I got home, she told me how nice and supportive he was on the phone, and that he fully understood my frustration. He promised to call back after his next surgery. He did, and Kay had clearly spoken to Dr. Jekyll, I had Mr. Hyde on the line. After explaining the circumstances, he paused, saying; "I explained all this to your wife." I reminded him that she was not my wife (being far too bright for that!). He elaborated on the confusion with scheduling, and again referred to Kay as my wife, which I corrected again. In my most polite fashion, I told him I just found the whole thing "unprofessional" and unsettling. He broke in saying he was not going to take a "browbeating" and that he would be happy to refer me to an ENT at another facility who does fine work. He went on to say that since I had known about the tumor for a few months, he failed to see what difference a few more days would make. I assured him that I was "in his care" and the conversation ended rather softly. I figure, once you know you are dead, lay down.
Terrific, the guy you pissed off is going to do your surgery. "Other than that, how was the play, Mrs. Lincoln?"
I try to laugh by making jokes, to keep from crying. No one knows how frightened I am of this cancer. No one knows how scared I am of the surgery and the resulting recuperation. No one knows how much more stress this puts on Kay and I, but the strain is very tangible. I am sure they could not operate on me tomorrow, my blood pressure must be off the peg the way my head feels. If they cut me know, I'd bleed out in a heartbeat, it would be like puncturing a steam line.
And that, is why they call it the practice of medicine. They just can't get it right. They were so close; they had me on their side, an eager and cooperative patient. Now I just want this over. But after that, boy, is somebody going to get a letter!
February 10, 2002
On Friday the 8th, the good doctor left me a message indicating we were good to go at Meriter Hospital on Wednesday the13th. He went on to say that his scheduling nurse would call me later in the day to firm up details. She called later, leaving me a message that the surgery would probably be at University Hospital. I think it would be a good idea to call them late Monday and make sure we all show up at the same time and place. I am able to laugh at this.
Today has been declared Kay Day. For the past couple of weeks and for the next few, every day has been Larry day. It was about time to do some special stuff for her. It started with baked French toast and a little extra snuggle time in bed. Mother Nature had provided a little over an inch of wet fluffy snow, so we got some exercise and fresh air clearing the walk and enjoying the beauty of it. Then it was off to a Disney movie - Snow Dogs with an improbable Cuba Gooding Jr. driving dogsleds in Alaska.
At three points in the movie, I began to cry for no apparent reason relating to the film. My emotions seem to be well out of whack right now. Maybe it is the stress getting to me, maybe it is just male menopause, but it is a bit of an emotional roller coaster, and a ride I don't really enjoy. At this moment, I am somewhere between very calm, and slightly depressed.
Got an e-mail from another survivor today, only to discover he is still smoking. I scolded him quite harshly, I'm afraid. Since I have not yet quit, it is a bit high-handed to be critical of another. My last cigarette will take place either the night before surgery or on the way to the hospital. Probably the later. After lashing him, I realized I wanted more information from him. His surgery sounds very similar to mine and he reported little lasting effect on his speech, which is a relief. I wrote him again, asking if he could give me a feel for what to expect in the first few days after the surgery. I have not heard from him yet, and am eager to hear of his experience. Knowing what to expect might be very helpful in getting through it.
The sun is shining now, the sky that crystal blue of winter in the Midwest. The tree branches sparkle and drip of melting snow. It might be a good day to take our dog, Nadia, for a walk later. That will probably encourage a nap in the recliner. I fall asleep in my chair nearly every night now, probably the lack of nicotine stimulation. What a shame I cannot sleep through the night later. I suppose there is a corollary between the two, but I awaken in a sweat nearly every night. I'm having nightmares, mostly in hospital settings.
In preparation for the hospital, I've made a list of things I want to take. Laptop, pad & pen, new and comfortable pajamas, favorite fuzzy slippers, Palm Pilot, and a few bucks in case a Coke sounds good at some point. I think I'll wear the hospitals pajamas the first day or until I can shower. That way, if I get "messy" it will be on their linens, not my flannels. Once I'm up and showered, I'll jump into my own. I'd like to think that will be Thursday.
I think I can last two more days physically, I am not certain of my emotional state by then.
February 12, 2002
In twelve hours they will roll me into surgery. I probably will not write again until the wonder drugs (hope they are good ones!) wear down to a mild buzz.
I have to thank some people before I write another paragraph. Kay, you little dynamo of energy, love and support, you are a handful. On one hand you've propped me up and kept me going so much that I often wonder how I could get by without you. On the other hand, if I did not care so much for you, this might actually all be easier. You give me a reason to fight this and win. Thank you darling and my advance apologies for what a pain in the tushie I am going to be for the next several days. You've been there with me for all of this and without you to lean on, I'm not sure what would have happened. I can't wait to see the smile on your face in the recovery room tomorrow morning.
To OCF's own Brian Hill, heartfelt thanks for the support. Brian has the uncanny ability to know when to poke me and when to prop me up. He tells it like it is when he needs to and throws topspin on everything when he knows I am bottoming out. Never met him, have yet to even speak with him on the phone, but I feel his hand on my shoulder every time I get scared. I am going to call him tomorrow at his request. He would not settle for e-mail. Someday, we'll share a bottle of wine.
Another hat tip to my son Dave and his wife Gail for driving in for the surgery tomorrow morning. He was reluctant to see me, as I will be, which I fully understand. He agreed instantly when he learned I did not want Kay to spend those awful hours alone waiting during surgery. It means a lot to me that they acknowledge my soft request that someone take care of my caretaker. Doing the hard things is the strongest expression of love, and I'll have lots of that waiting for me. Sharing his father's sense of humor, my son said "If you meet grandpa while you are under the anesthetic, don't go with him." My father passed away last March. I promised not to, and told Kay I'd stay away from bright lights.
And the rest of you I will not try to mention all the names. My deepest thanks. Prayers from those who know me as a cynic, jokes from those who know I love laughter, tender words from those I will never meet - you exhausted all the media we use these days. I've had phone calls, cards and countless e-mails even though I have kept this fairly private in the "real" world. Family, old friends, new friends, total strangers all gave me strength and peace. My heart is full of your care.
Finally in the loop (well, sort of, I refuse to let her read this web journal) my mother called this evening to wish me luck. Her voice broke a few times, so did mine. Good stoic Midwestern stock we'd cough, then discuss the weather and her upcoming trip to Arizona to visit her snowbird pals. Her parting words were "I just hope they get it all." So do I Mom, so do I. And if they don't we'll just keep chasing it down, one way or another, until we do.
Tomorrow the battle starts. I'm ready.
Checked into the hospital at 6:00 AM and arrived here smoke-free, having crushed the last few at 10 the night before. That was a long night, with less sleep than I expected. Played hurry-up and wait for a while, but when things started moving it was at a frightening pace.
The nursing staff in the recovery suite I checked into was fabulous at getting me settled and comfortable. The anesthesiologist, also named Larry, oozed confidence. Big bearded fellow of 40 or so, gray cropped beard and hair and a diamond stud in the left earlobe. He had gentle hands as he inserted the IV into the vein in the back of my hand. For the next several days, he explained all my injectable meds would be delivered through that port, not my skin, as was the case in the past. He was a man of his word; I've not felt a pinprick since.Larry asked if I breathed through either nostril more easily. I was surprised at the question, and he explained that he was going to be putting a breathing tube either down my throat or down my nose to breathe for me while I was out. The anesthesia would make me unable to breathe for myself. He also warned me that it was not impossible that it still would be breathing for me after surgery if the operation became more complex than expected.
Kay rode the elevator with me to the surgery suite, but we were quickly separated, too abruptly for any of the things I had planned to say. We squeezed an "I love you" in with a quick hug and I went to the pre-op holding pen. Larry put the finishing touches on my IV as the surgeon briefed me. They had found some suspect structures in the lymph nodes in the CT scan and he was going to do more of an incision than planned to pull those as well. I was irritated to learn this information at that juncture, but pressed on. It seems he could have let me/us know before the minute of surgery.
We rolled to the OR, I remember the oxygen mask on my face, saw Larry spike my IV port with a bag he had hanging and the lights went out on schedule at 7:45 AM.
Not quite four hours later, I felt a bed bumping below me, looked up and saw the sight I had wanted to see. Kay, David & Gail all waiting and smiling. The doc had only told them "it went well" before he dashed off. A round of hugs, tears and handshakes ensued. I even croaked a few words. As planned, Kay grabbed the camera and got shots of my tongue and neck for my no-smoking screen savers.
Dave and Gail left almost immediately, needing to get back to work. Kay kept a smiling watch on me as I sucked ice chips and moaned. A few hours later and I was on my feet - the need to urinate upright is a strong motivator! Once I did that, they moved me to my room. I was pleased to see I had no roommate.
A few of the notes I scrawled on my notepad tell you how the day went:
"I love ALL of you so much!"
"Should have brought a mirror."
"I've lost my ice cube."
"Not sure how to swallow."
"My vision seems cloudy." (My glasses were dirty)
"You must be so bored!"
"I keep finding strange things in my mouth that may be my tongue?"
I got a few e-mails off, enjoyed some liquid dinner got a phone call from the Doc. Again, saying all had gone well and that he would visit us in the morning. Kay was tired, I was tired and dopey
.and we parted for the night.
What is it about hospitals, I wondered? Why would they wake you from a sound sleep every two hours to get your vitals? One of the best nurses I've had so far, Melissa I think, explained it to me. I had admitted to being a heavy drinker (a liter a week) upon admission.
The last straw was the nurse's aid making up the empty bed at 2 AM with the lights on. She should be very glad she did not understand what I said. I am not yet very intelligible, nor would she have liked what I called her.
February 14, 2002
The day started at 2 AM with vitals and a shouting match, at 4 it was time for vitals again and at 6, I abandoned sleep. Kay arrived shortly thereafter, and so did the Doc. All the news was good, as usual, and he was very helpful in answering my prepared list of questions. He allowed me coffee in hopes it will cure my God-awful headaches, agreed to letting Kay supervise a shower (I was getting a bit rancid) and that I could be up and around.
He felt adding Medrol to the drug regimen to knock down the swelling in my tongue was not appropriate, but he was pleased that I had moved off morphine the night before, onto Tylenol with codeine. My fever had gotten to 101.9 and morphine does nothing for it. He had no answer for why my eardrums hurt and felt my tongue and speech were progressing nicely. His B team stopped in later and agreed with all the above, adding some good dietary news. I now will get soup with chunks, not just broth.
Through none of this did I get sick, which was a big concern. I was a major puker when I had surgery as a kid. Vomiting post-op is the absolute worst! Better anesthesia, techniques and maybe I watched my diet better this time. These people even put Pepcid in my IV so I don't have heartburn! On second thought, who gets heartburn on popsicles, beef broth and jello?
The shower was amusing, I think Kay's shoes may have gotten more wet than did I, but I felt and smelled better. I very gently and selectively brushed my teeth to everyone's delight, I am sure. Once I had pajama pants on, we took a tour of the ward. It's tough to make much of a walk when you have to drag the damned IV stand along with you.
Looks like I am about to get a roommate damn, with my luck, he'll be a sports nut with the TV on all damned day. Good thing I'm mobile!
February 17, 2002
We made it just over 24 hours without returning to the hospital.
On Saturday, feeling frisky, I convinced Kay we needed to go to the pharmacy and pick up my nicotine patches then go to the grocery store so I could select slurp-able foods for the next several days. At the pharmacy, we discovered why Kay had been unable to get my patches on Friday. It seems the hospital had billed the insurance company for a 30-day supply, not the three I had gotten there, and they refused to let me take any home. An email to the insurance company, who thinks I am trying to renew a prescription early, has probably straightened that out by now.
As Kay drove about town on our errands, I cautioned her to drive carefully. "If you hit someone, my head could pop clean off by the looks of these stitches." By the time our chores were finished I was a bit shaky on my pins. I was very content to curl up for a couple of hours with the book I'd picked up at the library. It was good to hunker down in my own recliner again.
Rested, I joined Kay and Nadia for a short walk before what passed for dinner. Nadia was delighted to have her buddy "the Sheriff" (I'm the discipline agent, but Kay is the alpha dog) back on her turf. She also knows my walks tend to be a fraction of the distance Kay takes her on. This one was a sedate stroll of about a mile.
After a couple of mugs of blended soup for my dinner, we settled in to watch a movie on video we had rented on our outing. About 8 PM I asked for a break in the film to put my pajamas on. When I got up, Kay said " your chin, looks swollen." Checking the mirror, I had to agree. It looked rather like someone had hidden a lime under the skin between my chin and the incision. Kay got on the phone and 10 minutes later we met the on-call ENT in the Emergency Room at University Hospital.
While a bit disorganized and unable to find much of what she wanted in the room she commandeered, the incredibly young ENT decided that it was probably just post-op swelling, but it might be best to see if she could drain it. We debated the idea of numbing the area very briefly. I soon had four deep pinpricks under my chin. The first two were from small syringes of local anesthesia I decided I wanted. She then produced a syringe roughly the size of a bicycle tire pump, and I closed my eyes, gripping the chair to avoid running away. A few minutes later, she announced she was finished and I saw about two cc's of reddish pudding in the barrel of the syringe.
It took two more stops at pharmacies to find one open to fill the prescription for antibiotics she prescribed. As we walked into the first one, I asked Kay if I looked like anyone to be messed with? I had on an old leather jacket, jeans and a fatigue stocking cap. It went well with the 80-odd young stitches in my neck and a big bloodstained gauze pad under my chin. "You ought to see the other six guys," I said jokingly as we strolled into Walgreen's. Nothing shocks the pharmacist working Saturday late-nights, I guess.
When we returned home, the rest of the movie seemed kind of low key.
I want to get some of these down, before I forget them. I've made it pretty clear that waiting and wanting more sleep are pretty common throughout this process. There are a couple of other things to consider:
Both the anesthesia and Tylenol III I am taking carry warnings about this problem. Bear in mind, I am one blessed with the regularity of a golf-course goose, so this struck me as unlikely. I could not have been more wrong. Other than incredible (thankfully, not fragrant) gas; two glasses of prune juice and 2 of V-8 per day are non-productive. My belly sounds so much like an approaching thunderstorm that I am expecting to see lighting and Nadia thinks I sat on a duck call. I may soon resort to six feet of garden hose, a funnel and a bucket of warm water.
An admitted coward, I have not been shy about asking for and using painkillers. My advisors (Anne, Mark & Brian) told me to stay ahead of the power curve told me in pain management. It was good advice, and easy to follow. By the same token, I experienced far less pain than I really expected and am down to "only" 15 ml of Tylenol III every four hours. The middle of the night dose is about the time all the fluid I am consuming would wake me anyway, but I think I might not need that dose if I were not up anyway.
Ironically, even though I am back on caffeine approaching my normal consumption, I am still plagued by headaches. And I still have the very confusing pain in both eardrums. It reminds me of flying with a head cold when your ears can't pop.
I remain completely smoke free. Yes, the cravings are there. I want a cigarette especially when: on the way to the hospital, on the way out of the hospital, sitting at my computer and with that first cup of coffee in the morning. That being said, if you offered me the choice of a bowl of pretzels with cheese or a cigarette, I would not need a match. I miss snacks more than smokes. I'm going to be a blimp!
Do the math with me. If we assume I smoked an average of two packs (conservative) or 40 cigarettes a day, for 365 days a year over 35 years, that comes to 511,000 cigarettes. I figure half a million of anything is probably enough. I wonder how many cars that would have paid for?
Kay confessed Thursday night on my homecoming that she is worried about my drinking and the link to oral cancer. She regrets not having nagged me more about the smoking and says she will not make the same mistake again. I sincerely don't think her nagging me would have changed anything - then. What I hope she has noticed by now is that I have greatly reduced my drinking already, and am not finished with the process. Instead of my usual (very stiff) 3-4 Makers Mark and water every evening, I have one very weak one. I'd like to get down to less than 7 a week.
Everyone says I sound "good" and they are amazed I can talk at all when they see the tongue. I think I sound like I have a mouth full of marbles, and have lost my D's entirely. I will want some therapy.
Is still swollen, especially at the back or base of it - it feels too large for my mouth. To swallow a pill, I have to lift it over the back of my tongue, drop it in the small opening and then chase it with water. The incision started at the left tip of the tongue and went back at a 45% angle to the point where it joins the floor of my mouth. Once that chunk was removed, they stitched the remaining edge shut like you'd close a suitcase. I can see about a dozen stitches on the tongue and floor of my mouth, and am told there are more inside. I think of a snapping turtle's tongue when I look at mine.
The stitches come out on Thursday at 9. That's when I'll find out when I can start speech therapy and go back to work. I think it will be on Monday the 25th, if I can stay out of the hospital in the meantime! From the 9th of January to the 25th of February about seven weeks in total time. It has been one helluva ride!
February 20, 2002
My one-week anniversary of the surgery can be celebrated today. This time a week ago, I'd guess they were stitching me up. I have no complaints about their handiwork based on experiences to date.
Admittedly, I am more than a bit colorful, not quite ready for public viewing. Most of the underside of my left jaw is that greenish old-bruise look. It does not bother me too much, and I can't see it unless I look in a mirror. Swollen between the incision and chin, I must resemble a cartoon pelican with a mouthful of seafood. I once worried about a double chin now it's a 6X, I think. If only I could grow a beard! I'm still not shaving around the incision, but all that causes is white spikes among the black silk sutures, which come out tomorrow morning. I have too little facial hair to be creative.
The jaw is mostly just colorful. There is so little pain I am weaning myself from the codeine for the day. Oddly, I have what feels like an invisible bruise in the middle of my left jaw. I think it is simply part of the numbness that comes with healing. I get twitchy tingles that run from the jaw to the point of incision behind my left ear. To finish this palate of colors, directly under my chin, now protruding a bit, I look as though I've been snake-bit. The four pokes the young doc did at the ER on Saturday to drain my chin have left her signature. It looks like the bright red/blue pinpricks/bruises left by a snake's fangs. As much as I hated that needle, I'd face it again long before a snake! I think most of the swelling is just post-op healing, but will not be surprised if wants draining again.
The tongue, having finally found the courage to look at it, is amazing! The first few days, I'd open my mouth, look into the mirror and immediately turn my head or close my mouth. I never really saw it until Saturday, I think. I simply could not bear the sight of the bloody stump I saw when I first looked, and that is all I could see later. Now I stare at it multiple times a day. Each day brings new surprises, most quite pleasant.
There are multiple shades of pink. A photograph can not capture them - I've tried. I can't recall ever seeing my tongue that pink. I smoked so much that it often resembled a piece of bacon, with good reason. The healing process, combined with not smoking (yes, still) has that important part of me looking good! The scaring is nearly invisible to my delight. I do see a couple of things that trouble me, however.
To my left of what was once the tip of my tongue (I don't know what to call it now) I can see a small fissure in the surface of my tongue. I would estimate it at ½" long, a 1/8th inch wide, and a 1/16th in depth. It leads from the top of my tongue to the seam of stitches connecting the bottom of my tongue to the floor of my mouth. I'm no surgeon, but it looks like some stitches pulled early. I'm suspecting that may want a needle and thread before long, and can't say I relish the thought.
Maybe I talked too much and ruptured them myself. No one had warned me of vocal rest and the doc called me on the phone the evening of surgery, so I have to assume talking was okay.
If you were to follow that seam to the floor of my mouth, you would notice something odd. It looks as though a few stitches hold the bottom of the front portion of my tongue to the floor of my mouth. Behind that spot, I can see my tongue arch and enjoy free movement. It is my assumption that Dr. H has sewn the under-repair portion of my tongue to the floor of my mouth. Perhaps this was done to stabilize it temporarily during the first few days of healing. It looks as though if I were to snip a few sutures (most tempting!) designed to dissolve on their own; my tongue would be free. I am pretty sure that would take me back to nearly normal speech.
Is it just me, or does this seem like something the doc would mention? Especially since he knew how freaky I was about my voice. I would not care to think that it was his intent to suddenly salvage my speech, ala' faith healer laying on hands, as he pulls those last few stitches tomorrow. Most likely, he was in a hurry and forgot to mention it. He has a history of that. I apparently had no reason to have this information.
My tongue feels compressed. Previously I said it was too big for my mouth. It is simply arched unnaturally with this restraint. As a result the opening to my esophagus is somewhat restricted. It also keeps me from brushing the top of my tongue when I do my teeth. The area on the "other side of the hump" is beginning to look a bit mossy. This can't do my breath much good, but Kay has not mentioned anything. Actually, the lack of that smoker's smell, probably makes anything smell fine. She commented this morning that my hand no longer smells like an ashtray.
And smell, can I ever! My sense of smell is so heightened I can't believe it. Understand that not all smells are necessarily pleasant. There are times I would rather not smell quite as well. Being good urban dog-walkers, we gather Nadia's stools in sandwich bags for proper disposal rather than leave them in a neighbor's yard. I had no idea we may try changing her food. Last night when I awoke at 3:30 to visit the john, I walked past a candle that hadn't been lit for hours. Smelling smoke, I was convinced the house was on fire briefly waking Kay with lights and my wanderings.
The liquid diet has been a major pain. I love food, and not just the eating, but everything about it. I love reading recipes, planning a meal, buying the ingredients and preparing the dish. Fortunately, Kay does not mind washing dishes I can take or leave it. For the past week, I have tried to get by on pureed soup, frozen homemade or canned. It was fine the first night as it beat the hospitals "broth". After that, exactly as boring as it sounds. I even tried some by Wolfgang Puck. Once it goes through the blender, it's swill regardless of who made it. I'm amazed that I have only lost 10 pounds. A little disappointed too!
Last night I cheated, but only a tiny bit. I had picked up a pound of orzo (rice shaped pasta) to have with butter and garlic or gravy. That just did not sound interesting enough. I surfed up a recipe for orzo carbonara from Epicurious.com and blissed out. White sauce, Nuetske's bacon, Barilla pasta and a glass of Merlot ah that's more like it! If I could have had some salad and crusty bread it would have been perfect. But even though it was not perfection, it was a step in the right direction. I'll settle for that for now. Because every day gets just a bit better!
February 21, 2002
I will eat solid food tonight! I have not decided what the main course will be, but you can be certain a crunchy salad and some good bread will be included. Maybe this will stimulate a little action in the lower regions. Nearly 48 ounces of prune juice later I remain non-productive. It's kind of like a presidential election: a lot of noise, a little stink; but nothing significant comes of it.
University Hospital looked far less threatening this morning. Today it was a more comfortable environment; no unknown lay behind that façade to frighten us we were in the end game. We got there a few minutes before the nine o'clock appointment and made ourselves comfortable. At 9:30 we saw Dr. H leave the treatment rooms, headed in the wrong direction. It was nearly 10 before we saw his assistants. His nurse took my blood pressure due to my concern about taking Zyban while wearing a nicotine patch - 130/78, highly acceptable!
The stitches came out rather painlessly thanks to an eager young medical student. Quite the connector - he really took time to get to know us as he snipped and tugged. I wonder how long that will last? If they teach it in medical school, it has little longevity in my recent experience.
By 10:15 the doctor himself arrived. He was due in surgery at 11:00, and the OR called while we were with him. He took a quick inventory gave us very positive words of encouragement. I think he spent more time with us today then he did between diagnosis and today, excluding surgery of course. He was downright chatty.
He was pleased with my non-smoker status, liked the way everything was healing and wants to follow-up in a month. The follow up is to make sure nothing secondary appears and to check on the healing progress. He'd like to see me quit drinking, thinks I am making great progress and says Makers Mark was the only alcohol he had in his home. I offered to send him a jar, which he declined. He also recognized one vice at a time was all we really should strive for.
In a very positive way, he explained that I am one of the lucky ones who was able drink heavily for years and suffer no major sociological harm. No drunk driving charges, no loss of employment I'm not a skid-row bum. He sees alcohol as an enabler for the carcinogens to attack the tissue of the mouth. He also pointed out that heavy drinking and smoking were common bedfellows. It will be interesting to see how this evolves.
As to my other questions:
- Back to work on Monday, but pace myself
- Still no clue about why my ears hurt
- The swelling on under my jaw was normal and did not need to be drained (whew!); it is simply the excess fluid from the former lymph nodes and will go down in a week .
- He had little concern about the combining of Zyban and the patch.
- My tongue is indeed stitched to the floor of my mouth by intent and it will not vastly improve my speech when it "pops loose".
- Tylenol III does have codeine in it, but not enough to worry about either addiction or withdrawal issues.
- The fissure at the tip of my tongue is normal healing and will not need to be repaired.
Kay and I thanked everyone in sight and booked a follow-up appointment before returning to the car in the parking ramp. I think we could have skipped, we were so happy.
Happy yes, foolish no, so we stopped at the pharmacy to refill my Tylenol III prescription and pick up more nicotine patches. This is not a battle that is resolved in a finger snap of time. I have months of withdrawal to deal with, probable therapy to regain my normal (I hope) voice, and apparently a battle with demon rum on the horizon. That one wants more of my thought.
Knowing full well that my cancer was far less significant than most who have gone before me, and many reading these words, it was without a doubt the most frightening thing I have been through. That was because I was never in control, did not always understand what was happening, did not know what to expect and rarely had all the information I needed to be comfortable. At least, not through the normal channels provided by my healthcare professionals.
I have learned more about the root causes, what to expect and a good bit of forecasting from the OCF website, Brian Hill, Anne, and Mark, my electronic support group. I will never forget that. Without the OCF website, none of these would have been available. I do not know how I would have handled the past two weeks, but certainly not as well. This information source, these people who chose to support, console, educate and even harass me made all of this more tolerable. And, in all candor, being able to write this journal has helped ME as much as it has helped anyone. It focused my thoughts, plans and resolve. It helped me "put on your fighter's face" as Brian called it.
As a result, I have offered Brian and OCF whatever support and efforts I can best deliver to help this organization grow and help more like myself. I urge each of you to do the same. Become a member to your financial comfort level, make a contribution, ask your dentist if he/she normally does exams for oral cancer. Make sure he/she knows about this website. They are the first line of early detection - the way we can make sure all oral cancer stories are as short and successful as my own.
These are my personal goals for the foreseeable future:
" Make myself as physically healthy as possible
" Commit totally to my relationship and career (in that order)
" Do what I can, to the limit of my ability, to put an end to oral cancer.
Will you join me in this? There is a lot we can do together. If anyone would like to communicate with me directly,email@example.com