December 10, 2002
Throughout this journal I have thanked my lucky stars for how light a touch cancer tapped me with. I marveled at the strength and courage of those who had far worse cases of cancer. It would appear I was simply too optimistic early on. I now find myself in a world of hurt with some very hard decisions to make.
The surgery of Thanksgiving pathology came back today. Of slightly over 100 tissue samples, 11 came back positive for metastatic carcinoma. In street language, I am screwed. Doctor Scott, the radiologist wants to get cracking right away. He wants a “warrior dentist” to evaluate my teeth and remove any that might be questionable (which probably means most) and then fire up both radiology and chemotherapy. When I asked if this was simply prophylactic in nature, could we not use a “lite” approach to both chemo and radiation? His response chilled me deeper than this Wisconsin winter…I had a 35% chance of survival if I go hard core on this. I have a 5% chance of survival if I ignore it.
Excuse me…could I have another bookmaker, please? What am I afraid of? All of it, every possible aspect of the treatment/side effects scares me. Let’s start with the concept of a warrior dentist, shall we? I want somebody who bears the nickname “Painless” not warrior! Damn, I nearly peed in my pants! And by the way, if we’re going to be this hard-core about it, I want far better odds then less than 50-50.
And finally, seriously, aw dammit, Kay deserves better than this. I really wanted to give her more than a chance to watch me die in the future. We just barely made it through that together when Nadia died. I watched Kay melt down just a bit more each of the three days we visited Nadia in intensive care. I could not have looked into those eyes through that pane of glass without disconnecting myself.
I made the doc let me take the night to decide. We’ll meet again tomorrow. In the interim, I allowed them to make the mask and shoot the planning CT scan to get ready. Then I came home to talk to Kay. We will make a joint decision tomorrow morning.
I’ll keep you posted.
December 26, 2002
For reasons I cannot explain, it is difficult to write in the journal this time. In the spring, every event was a reason to open the file and document what occurred. Now I seem to need to force myself. Is it energy or enthusiasm that wanes?
The “warrior” Dentist turned out to be a disappointment on all levels. He was a least-effort case study. His recommendation – pull them all, in fact, have someone else do it. He commented that it was a shame since I had good teeth and bone. He also noted that the jaw would probably break at the divot of bone removed by my former surgeon.
Catch 22 popped up with a question on whether or not my insurance would pay for the extractions. In a few days, the “good news” came in…they would pay for it, but only as an outpatient in an Oral Surgeon’s office. Fate delivered the same fellow who did the biopsy beginning this journey.
Let us recall my stated fear of dentists and dental work in general? Pull all of my freaking lower teeth? Gimme a break! What six guys will drag me into the room for the procedure? I had hoped to be hospitalized for this and would gladly face another neck dissection before oral surgery. As usual, my vote did not count.
Back in contact with radiology, they now want to give my jaw two weeks to heal before we begin any actual treatment. The extraction is scheduled for Monday December 23…Merry Moaning Christmas! That means it will be the first week in January before we start radiation. Once again, a sense of urgency created by the docs shifts to hurry up and wait.
This also means the third major holiday of the year to be completely screwed by surgery. My first was the day before Valentines Day, the second the day before Thanksgiving and now we’ll yank 14 teeth two days before Christmas. Romance and family traditions on those holidays went out the window. Had we seen this coming, we really should have blown the doors off on the 4th of July!
My visit to Social Security seems positive, but I will know nothing for 60-120 days. I have accrued a sizable pension pot from which to draw, if approved as disabled, and would still be allowed to earn a few hundred dollars a month. This would allow me to stay busy by still driving good old number 48! The pension and my driving incomes would allow me to once again be a contributor to the household…something I want very badly.
The day before my de-toothing, my son and his boxer joined us for a day of dining and doggy diversions. We had a great time despite the fact that our greyhound decided she was the boss of the dog world. Given the size of Dave’s boxer, it was a very large break for our Sunny that Dave’s Xena was a wimp. Had she not been submissive to Sunny, I think there may have been chunks of greyhound scattered over the dog park! While Sunny is taller, Xena is a very strong chunk of solid muscle and teeth.
Fate seemed to step in and punish Sunny, however. As we got back into the car we noticed Sunny was bleeding profusely from her right forefoot. At home we tried to stop the bleeding, realizing she’d torn out a nail. We ultimately took her to the pet emergency room and got the wound cauterized and dressed. Our fun day ended up clinical after all, but it did distract me from what waited on Monday.
All morning Monday I kept glancing at Kay. She is as dental phobic as am I. She was nearly the wreck I wanted to become. Seeing her discomfort gave me a reason to be the brave soldier I was truly not. I carried on this charade right to the surgeon’s office, but began to whimper as the door closed behind me. The good doc assured me he recalled me, promised to be careful with the weak jawbone and make this quick and painless. He proved to be a man of his word.
They started me on nitrous oxide, laughing gas, with which I was familiar. I was huffing on the nose-mask hard enough to be high as a kite before he spiked me with the IV, which I barely felt. An hour later I was convinced I had been awake during the entire process as I began to come out of the general…what a gentle ride it had been. After a few minutes in the recovery area, Kay claimed me and pointed me down the hall. I was so relieved to be done that I was floating.
For the next few days, Kay has a gimpy greyhound and a moaning middle-aged man as patients. Ever the trooper, she nurses both of us and maintains a great attitude. We celebrate a pretty bleak Christmas together. I owe her more than I can imagine but she keeps right on laughing with me as we shake our heads at our circumstances.
Now, four days later, I find my mouth nearly healed and what must be the worst behind me. I leaned on the Oxycodone and Ibuprofen as prescribed, but never took the maximum dosage. I’d rather extend my supply than max out early on. The swelling seems to be diminishing and my jaw is a very colorful mix of green and purple. Next week the stitches come out.
The docs have all told me that I will not be able to get a lower plate for at least six months due to the radiation treatments. Further, the “warrior” indicates that plates rarely work out for those with no salivary function like I will be. All that may be true, but I want a plate as soon as possible – I want a normal life every minute I can have one and refuse to surrender to the probabilities in advance! Hell, I may even finally get this missing upper incisor replaced while I’m at it!
And so we wait…whistling and bristling in the graveyard. I am tired of being told I am sick and having the treatments make me feel worse than I did before. I am tired of pain generated by things that will help me. I am tired of being told what to do, only to find it changes again and again.
Now that the teeth are gone, I can never have “normal” back again. I think I’ll gladly settle for cancer-free.
January 20, 2003
I’m enjoying a day off from therapies today. This will give me more time to rattle around the kitchen and to surf paper or web cookbooks for good foods I can get down. It also provides time to ponder some of the events of the last week.
My mind is drawn to the word “hero”, and I am not thinking of the fellow I encounter in my bathroom mirror. This boy, hard shell notwithstanding, has been near cracking a few times and I think the ragged edge will be very heavily explored later.
The ones I’m thinking of are the folks I’ve met or know. The range is from patients to caregivers to family members. I see them all the time.
There are a bunch of us stiff-upper-lip types who see each other waiting for or receiving treatment. We glance, nod and exchange a quiet knowledge. We’re stoic, optimistic and upbeat despite the fear lurking under the positive surface. I think we do this as much for ourselves as those we encounter. My mantra has become “I’m a tough old bird.” But this bird is prone to tears on a very regular basis. They are often positive and therapeutic, by the way, let us cry.
Professional caregiver heroes are different. The technician or nurse or physician that really connects with you is the exception, not the rule, where I get treated. They tend to be the younger or newer ones in the role…maybe it cannot be maintained? Maybe the burden becomes too much…either due to workload or the inability to invest so heavily against such harsh odds and high stakes.
Every day they go to work to try to do a balancing act. They need to provide their patient with enough poison to kill the cancer but only make the patient a little sick and do minimum permanent damage. They get to watch the progress of the poison, both positive and negative, and must feel it when they lose a patient. I’m not sure this is a tightrope I could walk. They are braver than I am; I’ll only be in this for a while.
One of my radiation techs, Lori, does it with a rough edge. She has threatened to turn my earlobes into fried bacon. I believe her. She has also found me three different types of therapeutic burn cream to minimize the damage if I remember to apply it three times per day. (By the way, I prefer Biafine, which is an Rx product and fairly expensive.) Rough edge or not, I appreciate her connection and care. Perhaps the bravado is her way of coping.
I can name a couple of Residents, a few floor nurses, a Chemo nurse and a nutritionist who all have connected with me. I’d like to think they are always like this, but I’m not sure I can believe it based on the other dozen or so I’ve encountered. Most of them stopped caring a while back, I think. Maybe it’s the workload, maybe it’s the pain of losing and maybe it is just their way of coping with a tough job. Regardless of the reason, I try to recognize and thank those who do take the time to connect. Never one to shut up too soon (ask Kay!) I implore them to never lose that skill, explaining how important it is to patients.
But here’s a thought to gnaw on for a while. We patients have no choice…we’re in this position with no options, or at least few. The doctors, nurses, techs and others are in this field both by choice and get paid (in some cases, extremely well) for their efforts. I’m not saying they are only in it for the money, but they do live pretty well. They are professionals and we should hold them to high standards. I think that should include connecting…but often it does not.
That third category, patient family members or loved ones, really demonstrate heroics in my opinion. I live with one and have met dozens of others.
At my first radiation treatment I was waiting for my turn on the table, and a bit nervous to put it mildly. A woman my age or slightly younger and a fellow roughly my son’s age came in and put me more at ease without trying. She had a canvas bag with her. As he herded her about, taking her coat and making her take the comfortable chair it would buzz loudly now and then. This left all of us chuckling.
After radiation she was to go to Speech Therapy for more lessons with the artificial larynx. She’d forgotten to shut it off when she tossed it in the bag. Every time it bumped something, it “spoke”. He chided her about having an adult toy along with her, and she laughed silently. Marcy called her to therapy and he said “I’ll see you when they let you out of the microwave.”
He and I chatted for a bit. I learned this was her 15th treatment, nearly half way, and that she’d lost her larynx just before the Holidays. Like my first surgery, she had clean margins and no nodes tested positive. They drove just over an hour, each way, for her daily dose of radiation. He took time off from work to be with her most of the time. I told him I enjoyed his humorous way of bantering with her. His response really got my attention. “Our family, especially Mom, have always approached things with laughter. If you can’t laugh at yourself and your circumstances, start digging the hole. She just laughs silently now.” Now that is heroic!
Kay and I have joined a cancer support group at the hospital. Every other Tuesday evening we gather with two social workers and about ten others. I’m the only patient; all the others are family members of patients. Husbands, wives, sons, daughters, brothers and lovers are all involved. I try to pay close attention to what they say…but find myself talking too much at times. I’m working on that. They are the real heroes in my book. I need to listen to them.
They do not have cancer. They could walk away from this at any time. They do not get paid for it. They did not choose to be involved in this. But they hang in with us, offering laughter, financial and emotional support, but most of all just enduring this with us – choosing every day to stay in this fight with us.
I can’t speak for others in my situation, but all this would be playing out far differently without Kay’s support and the promise of sharing tomorrow. I doubt I would have agreed to the chemo, maybe not even the radiation if it were not for her. I might have opted to just go softly to respite care when the time came and party my buns off in the meantime. (Frankly, that still sounds pretty good now and then!)
I see the determination in Kay’s eyes. She’s willing to get through this together – no matter how it plays out. I feel her propping me up when I sag. I strengthen when she says, “Are you crying? Are you okay? Can I get you anything?” That’s heroic by my standards, and it will probably get harder soon.
So far, our day-to-day life is pretty much unchanged except I no longer work, with all that entails. She comes home to a fellow eager for company who has a hot meal on the table or waiting to be nuked. We chat, play Scrabble, watch TV or read like anyone else. But in the course of this normal stuff she’s say “Did you grease your neck?” or “Do you have chemo tomorrow?” or “When do you see the Doctor next?” all of which kind of set us apart from other households.
As I have said before, I don’t know what I have done to deserve this marvelous woman, but I sure hope I can keep it up! I think I need all the heroes I can find right about now.