Thursday, October 13, 2011

Bizarre

People have repeatedly pointed out to me that I’m a magnet for the bizarre. I also have a somewhat unusual ability to take a step back from myself and look at my life, my personality, my behavior. If I choose to, I see things rather clearly. If I do this, then that will happen, which will result in this, that or the other. It’s like playing chess, where you always have to think several steps in advance. However, I suck at chess. It’s because I have little patience for it. I can be good at it, if I choose to, but I usually don’t, and I find that bizarre. So what people repeatedly point out to me is redundant information. “Did you pluck your eyebrows? They look thinner,” one socially challenged acquaintance recently stated. No kidding? Tell me something constructive. The brows are indeed thinner, but I still have eyes.

Proof of the bizarre in my life can be summed up by the following statements I’ve made over the past few months:
It’s probably just an infection.
It’s probably just benign.
I probably won’t need chemotherapy.
I probably won’t need surgery.
I probably need to learn to shut up, because I’m probably causing these things to happen by speaking of the devil.

As I checked in to the hospital for my final five-day intensive chemo session and went upstairs in H corpse to the ward, I was told to wait for a couple hours, that my bed wasn’t ready yet. An hour later, I was told that around five in the afternoon, a bed might become ready, but that it would be too late for the hospital’s pharmacy to prepare the poisons for that day. “Come back tomorrow, try again,” I was told.

Basically what had happened was that I had inpatient chemotherapy scheduled, but the ward was unexpectedly full of other patients. Of course I asked myself how this could happen. It’s not like people call an ambulance, “Help! I think I have cancer! I need immediate chemotherapy!”

I went back the next day. I was told to wait for a couple hours, that my bed wasn’t ready yet. An hour later, I asked my oncologist, who was in her office, “This is a strange question, but would it be possible to just do this next week instead? Tonight’s my wife’s birthday—it would be a wonderful surprise if I could take her to dinner. Plus I have a lot to do next week, and it would be easier if I felt good. Speaking of good, I feel the best since before any of this even started. I would like to enjoy it a little longer before it gets bad. Would this be possible?”
—A delay of a week won’t have any effect on your overall therapy, she smiled. I don’t see why not. Come back next Thursday then, and have fun tonight!

Strapping on my backpack, I was out of that hospital faster than my cancer had metastasized. Mrs. Mingus was having birthday coffee and cake with her mother and sister at the former’s home, which was but a few minutes’ walk, so I started walking. I would surprise her. When I’d arrived at the hospital, it was sunny. When I left, it was cloudy. I can make it before the rain, I thought to myself. A flash of lightning followed by a loud clap and even louder splashes of rain proved me wrong. That was bizarre.

Arriving at the Mingus-in-Laws’ house, I peered through the living room window before knocking. All three of the ladies inside jumped with shock when, during a particularly brilliant flash, a bald man, soaked in rain and wearing a hood, was seen staring at them from the garden. I waved. They stared back. I took my hood off. They stared back.

“What are you doing here?” Mrs. Mingus asked as she eventually opened the door.
—Surprise! I rescheduled for next week, so I can take you out to dinner tonight.
“That’s a wonderful birthday gift!” This last statement was followed by one of those hugs you remember forever. The kind where you can’t possibly make any closer contact with each other. At least not in front of your mother-in-law.

***

After a wonderful week, I checked in once more for the last inpatient treatment, and was ushered directly into a private room. An hour later, with platinum being pumped into my veins, I started watching the entire series of the original Star Trek, from the Sixties. It was hilarious, yet also thought-provoking. Good enough to make the days pass by unnoticed. Well, lots of sleep also helped. I had strange dreams. Scotty beamed me up, but left all the affected lymph nodes down on the desert planet for the Klingons to play with. Twenty-fourth century cure for cancer.

The nurses were wonderful, even the older lady who wouldn’t stop talking. She talked so much and so often that I would pretend to be asleep when she entered. Actually, a lot of times I wasn’t pretending. “Are you asleep?” she would ask.
—I was.
“Ok, go back to sleep then.”
—What’s wrong?
“Nothing, I just wanted to know if you were sleeping.”
I bit my tongue to restrain myself from saying something about my eyes having been closed. My food was served.
“Wake up! Lunch is here!” she sprightly announced.
—I’ll eat it later. I want to sleep now.
Fifteen minutes later, “Are you finished with your lunch?”
—No, I’ll eat it later. I want to sleep now.
And so on, and so on. It was bizarre. Once, while I was out for one of my three or four daily walks, dinner arrived. When I later asked what time to expect dinner, she replied, “It was already served, but you didn’t say you wanted to keep it for later.”
—That’s because I wasn’t here. What time did it come?
“Four o’clock.”
—It’s four fifteen now.
You gotta’ be quick in this hospital if you want to eat. If you want to eat. The nausea was pretty bad this time. Its cumulative effect was quickly building. When I left the hospital, I think I had eaten on average about two hundred calories per day, and that continued until the end of the week. I could no longer tell if the knot in my stomach was nausea or hunger. A few times at home I ran to the toilet and gagged, but I never threw up. Not once. I’m proud of that. Bizarre thing to be proud of.

I slept a lot upon my return home. At school, my older daughter was asked to draw a picture of her family. She, her sister and mother were all holding hands, standing near a closed door. “Where’s your father?” we found out the teacher had asked.
—He’s behind the door, sleeping.

I acquired a joint. I didn’t like pot, and never had, and now I remembered why. Just a couple puffs and my brain went haywire. Shaking, I knew I had seconds to get to bed before I’d pass out. Luckily I made it, and woke up twelve hours later. I did manage to eat some cereal and a banana when I woke up though. That Friday night, four days after the hospital, I still felt horrible. It was the worst one yet, the nausea from this hospital stay. I forced myself to drink a Guinness. I didn’t like Guinness, and never had, but now I couldn’t remember why. It tasted amazing. This bizarre incident was proof that my taste buds were messed up. Don’t get me wrong—I can clearly recognize that Guinness is a quality beverage. It just wasn’t appealing to me personally.

But that Guinness triggered my recovery, I’m sure of it. I slept well, started eating, stopped taking the nausea meds the next day, and within another week I had full energy. Every day I had the extreme pleasure of bicycling with my older daughter, so she could practice her new skill. I pretended I was Lance Armstrong. The last two Bleomycin treatments came and went. No panic attacks. No hair either. That had stopped growing again.

I started to focus on the surgery, now that chemo was officially over. I’d made it. The way I saw it, “it” was either over, or the hard part was coming. Research showed that the laparoscopic version of this surgery presented far fewer long-term effects and complications, and recovery was a fraction of the time as well. Less scarring. There is no justification for not choosing this form of surgery, if it’s available.

It’s not available in Estonia. Apparently, if a treatment or procedure is not available here, the Health Insurance Fund has to pay for you to go abroad to receive it. I haven’t made up my mind about that. To be honest, and I know this is bizarre, I would feel somewhat guilty for costing the state so much money to send me to Finland, or Sweden, for an expensive surgery.

I’m scheduled for a CT scan in the morning of the fourteenth of October. Tomorrow. This is the first time this blog has been absolutely up to date. For the longest time, I didn’t know what I had to do. I knew the date, but I didn’t know the when, the where. I tried calling my oncologist. No answer. I flipped through the mountain of paperwork I’d collected since June. I had seventeen telephone numbers for reaching doctors. I called them all. No answer. I called each of them several times a day. No answer. Not even voice mail. I didn’t know where I was calling either. Dr. X at home? The office? Which office? Upstairs in the ward? Reception? Nurses’ station? McDonald’s?

Finally, I sent an email to the main oncologist in Tallinn. Two days later she replied, last Saturday. She also answered my questions. For the first time, I kind of knew what to expect. Basically, if I have a tumor remaining that is larger than one centimeter, I will need surgery. If it’s less than a centimeter, or if there’s no tumor at all, then surgery is not necessary. “But we won’t be able to say that you are cured,” she cautioned, “without studying the lymph nodes in question. But the chance of relapse is six to nine percent.”

What I read was somewhat different. If there’s a mass, there is a forty-five percent chance it is necrotic tissue—harmless. There is a forty-five percent chance that it is a benign tumor. And finally a ten percent chance that it is uncured cancer. If it’s a tumor, it will possibly mutate into a chemo-resistant form of cancer at some point. I couldn’t find any statistics for how likely that was, or how long it would take. So I’ll assume a hundred percent, just to be safe.

So by that logic, if there’s a mass revealed in tomorrow’s scan, there is roughly a fifty/fifty chance of cancer again in the future. Fifty, versus six to nine. I am confused once again. I want to believe my oncologist in Tallinn. If the scan shows less than a centimeter tomorrow, I will choose surveillance. Theoretically, tumor markers in a blood test would reveal any recurrence, and I would immediately undergo the same surgery anyhow. Best of all would be no tumors revealed. The largest in the first place was two and a half centimeters. We’ll see how that little guy behaved through all this. Did he listen to the chemo and get the hell out of my body? Or is he like the Red Army and just doesn’t know when he’s not welcome?

This frightens the hell out of me, I won’t deny it. Tomorrow night, I’m going out. To celebrate or to dull my fear, that will become apparent tomorrow afternoon when I get the call from my Tartu oncologist with the results of the scan and bloodwork. I won’t say this time that I probably won’t need surgery. I’ve learned to shut up. I want my life to be normal again. I’m tired of the bizarre. But I’ll talk about the term “normal” in the next post. As for now, I’m anxiously awaiting the day when I can end a post on this blog with the words “The End”. This time doesn’t count though, which is why I wrote this last sentence.

1 comment:

Cathy Wang said...

It's very brave of you, and sort of therapeutic to document your cancer fighting journey. I hope your health recovers.

I had cancer too, and from experience, it's something that will always follow throughout life. There will always be that worry, concern, and doubt. Keep your spirit high.

best of luck.