Killing Words

I sat across from my oncologist on his visitors chair. Lokked at his creme colored walls, interrupted by a few large charts depicting areas of the human body in cartoon form. He sat as his desk, a goivernment issue gray thing with a large shallow middle drawer and three tller but thinner drawers on the left side. The bottom drawer was open a little and he was resting his foot on it. His leg was shaking, moving up and down in an organ pumping motion; a nervous habit I guess. He stared silently at his computer as I sat there, waiting. Finally he looked over at me and asked how I was feeling. He nodded and went silent again. He stayed that way long enough I finally said “what?”

“We have to stop your therapy,” he said. “The chemotherapy is making no progress. I see no effects, except that I think the treatment has accelerated the cancer.”

“What does that mean. I mean, I get that you want to stop my drugs because they aren’t being effective. But what’s this about it accelerating?”

“The bone survey we did, along with the scans, shows considerble progress in bone deterioration, particularly in the pelvis, spine and clavicle.” He looked glum for a moment, then brightened. “There has been no spreading in the skull though.”

“So, where do we go from here, then. I mean, I’m still not sure what all this means –if it’s not the obvious. I’m not going to continue to take the chemo.”

“Well, I’m afraid it’s not a good prognosis.”

“I guess then that my bones are really screwed up? I’m, like, really fragile now or something, right?” He sighed and shook his head. “What?” I asked. “The cancer is going to keep eating me up?”

“You need to begin the process of getting your affairs straight.”

“Look, you’re being cryptic and I’m a hard head. What are you saying? Am I dying?”

“Yes, Bob. You are.”

I sat stunned a moment in surprise. This was not the answer I was expecting. I had it all mapped out that things wouldn’t work. I guess I knew by my sensations and the amount of pain I was feeling wasn’t indications that were positive. But dying? I asked the question I’m sure everyone asks their doctor when they hear that. I asked “how soon?” He told me that he thought six months covered it, but that something could happen and I might get twice that. He was going to send me to Seattle for a second opinion, and he was sending me to the best. I had been given an appointment with the very best the VA had to offer, the very physician who wrote the large dosage chemotherapy and stem cell transplant procedures in use by most of the medical world. He was an attending physician for the VA in Seattle and Fred Hutchinson. Both institutions having excellent credentials in Multiple Myeloma.

I found my Seattle Oncologist to be kind of an elitist. My wife and I both disliked him almost at once. His bearing andf manner, his expressions and phrase tones were grating. He seemed to take on the cast of a daytime soap opera doctor as he told me that there wasn’t anything that medicine could do for me. “Your body can’t stand the chemotherapy. I see Doxorubicin, Velcade, and Revlimid cycles have been tried –and produced no effects. Positive anyway..” I thought about my regular oncologists prognosis and it was like he read my mind. “I agree with your doctor, except I think he was conservative. It’ll be a surprise, given your condition, if you get six months, but that’s the right neighborhood.”

“Nothing else to do? Nothing can be done?”

“Hey, you can go sign up for Medicare and go anywhere you like. But we’re pretty good here. But you do what you like.”

“I didn’t mean…” I stammered, but he’d already waved a dismissive hand at me and was rising to stand. He completed his maneuver and then smiled, actually a bit warmly. “Good luck.” he said, and left. My wife sat there for a minute just looking at each other until a nurse came in and told us we had to leave the room. They needed it.

I had been told by to doctors that it was over for me. I had confidence in their opinions, I mean, what right had I not to? And it’s a sure bet that their words were a heavy weight on me. I had already faced my death twice, and was unaware of the situation or attendant alarm until the occasions were over. But my body reacted badly to Doxorubicin and I nearly perished from toxic shock and anaphylactic shock as we tried the Doxorubicin. On both infusions, withing 8 hours I was in the hospital on respirator in ICU. The drug was abandoned; I chose not to go for a third time, knowing the expression that the third time’s the charm. We moved to Velcade.

But here it is, Halloween. The concentration is on death and being frightened. I honor the holiday but I have had my share of fright. I’ve had enoug for a lifetime. While it is interesting to hear about the bad luck of a person with cancer. It tugs at pathos and indices people to think that there, for the grace of God, ight be me. But for the recipient of the worst of all prognosis’ it is Halloween every day. AQlready feeling like death warmed over, my body wracked with pains from cancer and pains from neuropathy, I was sleeping so much that the world had a surreal quality to it that made me feel in a dream like state. Light all about was dimmed and I couldn;’t get warm enough, despite the persperation on my brow. I was frightened, so frightened that I tried so very hard not to sleep. And did that until I resigned. With the symptoms, my low grasp on a physical life, and a death sentence hanging over me, I gave up and accepted that death was, indeed, at hand.

In time, I began to wish for it to come, so fed up was I about the pain, especially the neuropathic pain for which there was no medical relief. I saw to my affairs, giving way many things and donating the rest to charities. I made arrangements for the life insurance I could get through the government and prepared a Will. Actually, I did a living will by forming a multi-person organization who took over ownership of my estate, even as I was alive. I had right of distribution, but on my death the various legacys left behind would not transfer ownership, it was already in the hands of the title bearer. Thus the estate would bypass probate and present a lower tax bill to my heirs. I made sure to research the various widowed spouse benefits offered by the VA, and wrote up instructions. I also added her to my VFW membership, so she could avail herself of VFW assistance to claim her due and be guided through the process by savvy and sympathetic Service Officers.

My sleep was interrupted by nightmares. Sometimes a noir court scene where a faceless magistrate would condemn me to hell. Sometimes I was paralyzed as unable to assist my wife, who I could hear being assaulted and finally killed by home invading thugs. At times I would fall onto a conveyor belt dragging me relentlessly towards grinding tines and spokes of deadly chipper machines. My entire life became Halloween with danger around every corner in sleep, and adrenalized fear in wakefulness as I lamented the loss of the people in my life.

Of course, I outlived the prognosis. It has now been two years since my six months, along with two months of grace period, has expired. Since I have taken no chemo for that same amount of time, the constant druglike fatigue, the agonies of Peripheral Neuropathy have faded (same my feet) and I am now merely saddled with the pain created by the cancer and my accidental abuse of those areas. I get colds and flus quite often; I’m sick perhaps a third of a year all totalled. But for the most part, I don’t have that exhausted and desperate feeling inflicted by the chemotherapy and so I feel pretty good. I can mnage the pain from the cancer, and if a spt becomes too problematic, I can have radiation to kill the affected bone and thus the cancer in that spot. But pain killers are so far doing the job of keeping me moderately comfortable.

My Halloweens are pretty much over. But that doesn’t mean I don’t get into the spirit of the holiday. I do. In fact, to a greater sense than before. Nowadays I understand what threat is, and running costumed through the neighborhood soliciting candy is definitely not it. I feel an odd kinship to the jack o lanters, skepetons and ghosts plastered with limbs akimbo in so many windows. I guess I feel a kind of relation to them, kind of like a soldier done with basic training, but is waiting for his first opportunity to prove themself. A kinship is felt towards the lines of skeletons and hosts up and down the street like troops boarding to report to their tours of duty, knowing I would soon be one of the cadenced formation alighting transportation to the unknown.

Happy All Hallows Eve. Now go out there and frighten someone until they wet themselves.