November 20, 2002
Nine months ago my ENT surgeon told me we’d “gotten all” the cancer. The tongue resectioning to remove the tumor and dissecting all the lymph and salivary glands from the left side had done the trick. We needed to watch things, but he felt this was the end of my battle. He had described my tumor as the “smallest and most survivable” he would see all year. All the pain had been worth it…I’d beaten cancer.
Last week he told me I had a new growth in the lymph nodes of the right side of my neck…I knew this…I’d pointed it out to him at my third 3-month check-up. Yesterday, he told me the needle aspiration biopsy tested positive for cancer. He now tells me squamous cancer grows slowly and involvement in the lymph glands is no large concern…and finds me “contentious” when I challenge him.
Here we go again…
Back into the arena of tests, diagnostics - scope this, slice that - wait and wait and wait and see. But now, question everything…this was supposed to be behind you.
Nine months of no cigarettes, nine months of cocky “I Beat Cancer” attitude. All of this fades with just a few words – “the biopsy is positive for squamus cell cancer”.
Today I spent an hour in a tube having a PET scan, Positron Emission Tomography. Think of a CT scan that is 6 feet long, takes 45 minutes and requires you to be injected with radioactive sugar to feed starving tumors. Tomorrow I will find out if I have more tumors. I worry about lungs, liver, bones and brain. I should worry given my history. On Tuesday I will meet with the surgeon reinforced by a radiologist and oncologist. Radiation and chemotherapy will now be part of the plan, one assumes.
The new job has evaporated, victim of the economy or my voice. My diction is less than perfect, the prospects and customers found me hard to understand at times. Regardless, August found me on the bricks again. No one every blamed my voice…but I will always wonder. I pay nearly $300 a month to retain the insurance that has kept me alive. It is my largest single expenditure each month. Even my car payment is smaller - the car is for sale.
This time, I wanted a change from “corporate America” and now drive a taxi for a cooperative here in town. It is absolutely the most fun I have ever had legally and with my clothes on. I love to drive, love the city, love meeting new people and lots of independence. It would be the perfect job if I could make a living at it, or had a retirement bundle to fall back on in the lean weeks. I drive from 5 AM to 1 PM Tuesday through Saturday…come for a visit; I’ll show you around.
As it is, Kay pretty much supports us. I cook a few meals a week, buy some of the groceries and make token contributions. This is not a healthy thing for a male ego.
The past two years have gutted me like a fish carcass left on the shore. I have little energy, no drive and less pride. Perhaps this old nemesis has been summoned to put a fire back in my belly (huge - I’ve gained 25 pounds since I quit smoking); perhaps it is back because now it knows it can beat me, perhaps I’ve willed it back to finish the job. Time will tell.
Tomorrow I will find out how large a foothold the enemy has seized. On Tuesday my generals will suggest a plan of counter-attack. I will ponder their wisdom and advise and make my own decisions.
I may chose not to fight, but to simply declare nolo contendre (no contest) and start shopping for hospice care. I doubt it, and know Kay would try to talk me out of it. Ironically, she is the reason I may chose this route. She deserves more and I do not want to have her watch me die ignobly while supporting me.
Most mornings at work, I stare through the windshield of Number 48 (a retired police cruiser with more miles than smiles) at the eastern horizon. I own the dawn, and watch it chase away the night. The black sky of night becomes the deep purple promise of yet another day. Each new day a gift to be spent any way we wish. The same windshield into which dawn bursts has a mirror designed to let me look backwards. Much of what I had done in the past led to where I am today. Most of my vision is the glass – the reality of today. I vow each morning to focus on today, to enjoy it, to fight hard and to let the past remain insignificant in comparison.
“Welcome back my friends to the show that never ends…” Come with me for the ride of a lifetime? I may need you to hold my hand in the dark portions. Just grab me when you see my chin quiver…I won’t be able to speak then, you know. We’ve been through something like this before, remember?
November 27, 2002
Being at the hospital by 6:30 for 8:30 surgery was no challenge. It was also pointless as an emergency surgery delayed my entry to the OR until after 11:00. This gave us plenty of time to watch the pre-op First Day Surgery environment…what an assembly line! In those three hours we must have seen 30 people go into and roll out of surgery.
Prior to the surgery, Greg gave us a few minutes to describe what was to be done. He would open the outer neck only – no work within the mouth this time. He knew there were a lot of nodes to be removed and estimated that I would be in surgery 2-3 hours. Kay planned accordingly. The anesthesiologist did a nice job of prepping me and I was very relaxed on my way into the OR.
It was a long day for Kay. I was in surgery for over 5 hours. At one point she even had the ward nurse call OR to see if was still there. When I hit the recovery room, I was one messy fellow and very sore.
The incision seemed larger and uglier this time. Maybe it was the search and destroy mission. I was disheartened to learn that Dr. Greg had found cancer in the mandible and did take a chunk of bone the size of a twenty-five cent piece cut in half.
It seems as though all the things I had hoped to avoid were coming to pass, in very small increments, sneaking up on me.
November 30, 2002
My concerns about finding the strength to get well are behind me. In chatting with Kay last night I admitted my fears to her…perhaps facing my fear triggered the rest.
Early this morning, when I thought I was awake, I had visitors. My late father and Ursa my bear totem appeared at the foot of my bed. No words were spoken, yet my father made me understand that Ursa had turned her back on me just as I had turned my back on her when I was “cured” by the knife in February. He had intervened on my behalf but that I must rejoin the battle or Ursa would again depart. The large bear’s head nodded in agreement.
I have long been more in tune with Native American cultures than traditional religions and have adopted the bear as my totem animal/spirit guide. As I fought my cancer the first time I would envision Ursa’s snarling maw as my source of strength facing a monster too large to battle alone. Envisioning this ally is restoring my confidence, renewing my conviction and sharpening my certainty that I will overcome this disease. Be it Buddha, Mohamed, Christ or a Bear all of us need such inspirations and support.
Today passes slowly…only the “too much” output of my wound drain keeps me in the hospital. It has been suggested that I go home with the drain in place. Given how glad Sunny, our greyhound, will be to see me, I think that would be looking for trouble. It is not a stretch of the imagination to foresee Sunny ripping the drain tube from my neck.
I seem to have two choices…dump some of the fluid out or simply convince the doc to remove the drain and send me home. Only remembering February’s trip to the ER to have excess fluid drained by syringe makes me hesitate…
December 7, 2002
Discharged from the hospital a week ago today, it seems a good time to take a quick inventory. Let’s start with the physical.
Even though this was “less” surgery than the last time, I am still far from able-bodied. Perhaps it was all the time on the table, perhaps it was the extent of the tissue removed, or maybe I am simply not as motivated this time. I find myself still dependent upon pain pills to sleep and I am sleeping nearly 12 fitful hours a day. Every afternoon finds me napping.
My right ear still has zero sensation – it’s a pity I am not interested in having ear pierced, you could do so with a Black & Decker product. Doctor Greg assured me he missed those nerves and that the feeling would come back. A second opinion is due later this week, Dr. Greg will no longer be my surgeon. The neck seems to be healing well, but the scaring is so pronounced I am reluctant to shave. Doc Chuck can give it a look later this week.
The right lower lip is also dead as predicted. I had been told it would leave me with a crooked smile, which is not an issue. What is an issue (ever have Novocaine?) is the inability to control fluids when I drink, and my tendency to eat my own lower lip when I bite into something. At the end of each meal, I need to wipe residual food off the lip, possibly wipe off blood and to be sure to clean the pocket between the inside of the lip and my teeth. Carrots are especially bad at packing up in there and there is almost always something that needs to be swept away.
Turning my head to the right is very painful, eliminating any thoughts of going back to driving Number 48 soon. The pain plus the meds plus everything else leaves me facing boredom for a while, I think. Doing some writing helps, but I can’t find it in myself to journal here like I did this spring.
I am suddenly a mass of pains that seem unrelated to the surgery, but now my paranoia works overtime. Is that pain in my hip or knee or face a new tumor in the bone? I’ve gotten copies of the PET scan and all it showed was tumors in the neck…where the radiologist had been told to look.
With no prospects of earning an income soon, I visited my local county/state welfare offices to see if any help was available. If I lied about Kay and I cooking separate meals, I might have qualified for food stamps. Ironically, if she threw me out on the street I’d qualify for housing, free medical and food stamps. I hope she won’t.
It seems that I must turn to Social Security and be declared Disabled in order to obtain any help. I meet with them on Friday the 13th…seems ominous, somehow.
On Wednesday I spend the day in Radiology finding out what treatment plan Doc Scott has up his sleeve and being fitted with my facial armor. I want Scott to restate his “probability” prognosis for me. Pre-op he had suggested a 0% chance of me lasting 18 months, or a 60% chance of survival with both surgery and radiation. I’m curious what we can do to increase those odds. Thursday is surgery follow-up and maybe a referral to a new Oncologist for chemo…we let the Aussie chap slip away for the Holidays. That’s a pity, I liked his no-nonsense approach. I’m curious to see how the new surgeon contrasts to the former and have some pointed questions.
Tomorrow Kay and I will drive to Milwaukee for brunch with my son. I look forward to his smile. Kay is continuing to be a constant source of strength and support. It does my attitude no go to know she is supporting me…but then I guess someone must. She asks me if I would have thrown her out if the circumstances were reversed and we both just chuckle.
Next Friday is the fourth anniversary or our meeting. We have agreed to celebrate that until we have a “real” anniversary. As one who loves to buy and give gifts, this will be a very depressing month. Being unable to give her anything will trouble me.
Round 2 | Next