All is Well: differential diagnosis

In the middle of October, I posted “All is Well”, another contradiction to despair. Events overtook me and I posted “Interval”, promising to post “All is Well: part 2”.

I will begin by explaining the difference between renal cell carcinoma and fat poor angiomyolipomas, so far as I understand it. The latter, also referred to as AMLs – not to be confused with Acute Myeloid Leukemia (that’s someone else’s nightmare) – are made up of blood, muscle and fat. Ours was spotted incidentally during an unrelated CT scan. It was a 4.1 cm. mass in the right kidney.

Did you know renal carcinomas can be diagnosed visually? So three weeks ago we got the bad news – kidney cancer. But wait a minute, the real target had been a 3.8 mass in the hip on the same side. Could be metastatic kidney cancer.

Honestly did not know I was capable of howling loud enough to alarm my neighbors.

But, stat, there was an MRI guided biopsy of the hip lump. Hip tumor not cancer. Rather a schwannoma, a tumor of the nerve sheath, in this case on the sciatic nerve and, in this case, benign.

Can there be kidney schwannomas ,we asked the Google gods. Possibly.

Let’s do another scan, stat of course, to see what is going on in adjacent organs – I imagine this one as High Def – and get a good look at the kidney interloper. Two days later, a voice mail message. Not cancer, but a fat-poor AML.

We had got used to the worst – every day terror, bleak future, all that good stuff. Hearing the no-cancer news, I had to put my head between my knees. One of us fell to cursing. The patient cried.

For three weeks, we had followed doctor’s instructions: prepare for the worst, maybe 17% survival in 5 years, gone in her early 60s. Then, when it was just kidney cancer, not metastatic we had a 96% chance. Now, we were back to 100%, or as close as you can be, given traffic on California freeways. We should have been happy, but we went around muttering, “It’s Tuesday, it must be cancer.” “It’s Thursday, it certainly isn’t.” “It’s Friday…”

We didn’t trust any doctor and certainly not a radiologist. The current one still wanted to call it cancer, despite a visible few fat cells. What we read, and we read everything, told us carcinomas had no fat. A radiologist in 2012 had reported that a tumor of 3.8 cm appeared on the left kidney. We ordered the CD record of it. Definitely, on the right. The radiologist had reverse-read the kidneys. If he had not, we would never have fallen for this funny little trick Nature sprang on us.

Lucky us. Lots of patients have discovered only after they’ve lost a kidney that they didn’t have cancer.

This morning, the urologist assured us that the offending growth will be biopsied when it is removed. When will that be? Well, first the main player, pain-wise, has to go. Simple to cut a schwannoma off a sciatic nerve, just don’t cut too close or -bingo- a different crisis here in Kern County. Recovery will take 2 days. When the patient feels better, she can call and get the kidney surgery date.

The issue of getting something to kill the pain is another whole drama. Governments make doctors’ lives hell when they prescribe opiate-type drugs. As far as I can see their draconian rules have not made a dint in the opioid crisis as yet. The neurosurgeon breezily suggested a pain clinic. Wait times for pain clinic appointments are at least 30 days. We live near an opioid addicted town, we might get lucky on a street corner. But, no, the urologist came through for the next 5 days. Not the same effective painkillers, not nearly as effective and rife with side effects. Weeping over the phone to the pain clinic got us an appointment in 5 days. And this is a temporary need, until surgery, for someone who can’t get up off the couch most days.

I am Canadian. We have the same struggles with diagnosis and waiting for surgery. I once waited for 7 weeks to have an intestinal carcinoid removed. I could eat only fluids or runny pureed veg. Great slimming diet. I was prescribed liquid morphine. But I absolutely never had to think about cost. Not true in California, even with Medicare.

This is a wonderful country, don’t get me wrong. Driving up the I-5 from the neurosurgeon’s, I remembered that, if California were a country, it would be the 5th largest economy in the world. But *#@! it, why doesn’t it take care of its people. My great nephew in Belgium had a 15 hour surgery on his brain, lived to tell the tale and got no bill.

Next up: insomnia of 10 months duration.

“All will be well and all will be well and all manner of things will be well”


Living in 3 Time Zones: a matriarch’s tale

There were stars overhead. A long-legged eight year-old had plunked himself down in the bed beside me. We could hear the revelers downstairs, but youngest and oldest, we craved rest. The stars on the ceiling glowed in the dark and I remembered sleeping under just such stars 20 years ago in Venice Beach, California, an ocean and a continent away. This is how far my family has spread. This is how far I have had to spread my arms to keep them – what? – not safe, for that is impossible. Let us just say “to keep them”.

Technology has made the job easier in the last 15 or 20 years. E-mail was a great help, so much faster that snail mail. Answering machines and FAX machines appeared. Then long distance rates started to fall, the mobile phone came along, and texting became possible. Distances were easier to bridge.

In Brussels last week, I watched the last episode of the BBC’s David Copperfield in which the Micawbers embarked on a sailing ship for a new life in Australia. Something had finally come up, as Mr Micawber so optimistically kept on saying it would, throughout his disastrous life. The villain of the story, Uriah Heep, was also on his way there, barefoot, chained to other prisoners, to pay for his crimes. His mother cried out, “My poor boy. I’ll never see him again.” Australia was just too far then, even supposing Heep lived to get released. Letters might be exchanged, but probably only two or three a year, given the time the voyage took.

In 1945 when my father moved us from the Eastern Townships of Quebec to Hamilton Ontario, my nine year-old self seriously doubted that I would ever get back to the mountains and the family I loved. Letters were posted and received weekly, but we had no phone. In the event of something momentous like a new baby brother, we could borrow the neighbour’s phone and pay the exorbitant long distance cost. In fact, we did return the summer after my brother Rob was born, in 1947.

Rob was the first family emigrant, hying himself off with a backpack at the age of 19 to explore the world. Our mother cashed in his life insurance policy to finance his getaway. By then it was a tossup whether our father would murder Rob or Rob would murder our father. All of the three older girls in the family harboured the same homicidal urge, but were not as capable of the deed.

Rob stayed safely out of reach of familial harm in Afghanistan, India, and Turkey, where various strangers had a go at him. Finally, he settled in Belgium. Where he had a phone which I could now afford to call to tell him our mother had been given only weeks to live. He thought it was a trick, and indeed, our mother survived against all odds for another 6 years. She had that ace in her pocket though -imminent death- and he came back for a visit – 3 years after he had left. He invited us to visit him andĀ  2 years later I did, with my young family. We formed a friendship then that had not been possible before. So I began the process of long distance living. What time is it here? What time is it in Belgium or Italy or Sweden, wherever his career as a film gaffer took him?

Just when I got the knack of that, my daughter Julia took off for New York City. No problem, same time zone. But -what’s this? She’s off to the west coast. She’s getting married in Las Vegas. And so I began living in 3 -count’em – 3 time zones.

It’s quite dizzying. Whenever I want to talk to Rob, he’s already asleep. Initially, after I returned from Brussels last week, I woke up at 4 a.m., Eastern Standard Time, thinking it was already 10 a.m., and called him then. My daughter up on her west coast mountain would be snoozing away in her 1 a.m. world. As I acclimatized to Toronto time, I kept missing windows of communication. I ended up texting Rob while he slept and getting his reply when I woke up. Julia is beyond the reach of cell phone texts at present, but I catch her at odd moments as she builds the fire in early morning.

As I lay there on Christmas Eve, looking up at the stars, I thought about all the grandparents who travel great distances to be with their far-flung families and sleep as like me in children’s bedrooms. I thought about older women alone in their cars on lonely highways and on long distance flights. Like me, they may well count over 50 such trips and see the results in maturing children who know they are part of something bigger.

That something is family. I can’t help it. I have to communicate, to be there. Someone needs to hold the family together and time has made me the matriarch.

Septugenarian Hobbit -part 2

Hobbits, as I said in a previous post dislike adventures. Bilbo and Frodo of JRR Tolkein’s The Hobbit and The Lord of the Rings were healthy, contented hobbits living in their houses under the hill in the Shire. They had no desire to leave even though Middle Earth might depend on their becoming wandering “thieves” in a good cause. As time passes, we catch a glimpse of an older Uncle Frodo, but he was a relatively young hobbit when he reluctantly joined Gandolf’s ragtag seekers of a just world order.

I’m more of a curmudgeon. I blame it on the PTSD. (See my memoir Never Tell.) I just paid Jet Airways about $700 to torture me for seven hours and in about three weeks, I will do it all over again. Coincidentally, they were transporting me from Toronto to Brussels. They began, as most airlines do by cramming me into a seat so close to the one in front of me that my tray table practically jammed into my mid-drift when the guy in front took his ease. I dropped my water bottle. Impossible to reach by bending. I had to take off my shoes and rescue it with my feet. It took me half the night to get my shoes back on.

And what a night! We took off at 18:15 or 6:15 p.m. to you non-24 hr clock people. (I mention this because my ride to the airport arrived 12 hours early.) Dinner had to wait until cruising altitude and other arcane circumstances had been achieved. Some of us had already swallowed our sleep aid in preparation for the torment. We were going to arrive at 1:45 a.m. Toronto time and be expected to function as if it were 7:45. I opted for the vegetarian meal just for show -and/or the smell. Oddly enough the meals were Indian on this Indian airline, the only airline that flies non-stop from YYX to BRU. In truth, I had a plastic container of plain rice noodles, green beans and chicken. By avoiding curry and yogurt, I hoped to avoid gastric torture. I hesitate to admit that I also dropped the lid. (Well, see, there was this vortex…)

Then it was lights out about 9. Nothing but the glow of a dozen seat-back screens playing Bollywood movies silently. My own was not on. But wait, it is. I press the bottom of the screen, I get the menu, which invites me to “Turn off Screen”. I touch that choice. Nothing. I am back to the glaring white screen advertising Bandit Queen, which I have memorized, “Married at 11, —- escapes her husband’s demands, is raped by village elders…” Well good for you becoming a bandit queen. Now vanish. And she does, but she appears randomly throughout my short night, waking me from my fitful sleep. Finally I pull my red tam down over my eyes. Begone white light. I’m not ready yet.

My seatmate is a long-legged fellow on his way home to Delhi. He has been watching a spy movie with English subtitles and, for all I know, English dialogue, but, although he is now Canadian, he finds what little I say to him puzzling. I do not tell him that his elbows and knees are encroaching on my $700 space. Where else can he put them and besides imagine what he is paying to be tortured until Delhi at 20:30 tomorrow.

Actually I am quite surprised by the amenities – an actual meal, a little red pillow and a beige and brown plaid blanket, wrapped in cellophane. On transcontinental flights, I am used to paying $5 each, if they are even available, and being offered subs at an additional cost in case I should feel food necessary.

So here we are, crammed into a vertical shelf-space, getting a little entwined limb time. I know at my age I should thank my lucky stars. I am grieving a little because I wore my red shawl to the restroom. It must have slipped off and one of those scarf-wearing, India-bound women snaffled it for her own. Or turned it in, but not to the flight attendant, I asked. She can’t know that it was the only pretty thing I could jam in given the 23 kilo weight allowance. And it matched the tam.

So we turn -in unison of course- and shift and rustle about in our strange intimacy. We lose our pillows and retrieve them, twist our blankets, flinch when the over-lap is too much. How is it possible for the lower back to hurt so? And then suddenly, it’s morning. No dawn is not creeping up over the dark, deep ocean. (Floatation device under your seat.) It’s hospital rules. Lights shall come on. At midnight in this case. The big screen at the bulk head fires up to show our stalwart plane approaching the coast of Belgium. No glow from London off to the north. Did I mention I have a window seat?

A small wrapped cake lands on my tray table. Whoa! An Indian custom? I stare at it about half a second before ripping into it. Sugar! Food rules be damned.

An hour later -why did we need a whole hour to eat a small cake?- I find myself reporting to a custom’s officer with a Flemish name who silently feeds my passport into the computer to see if I am that septuagenarian terrorist they’ve been expecting. He asks me one question in English -what is your destination. Well, Brussels as it happens. Then I have only to wait and wait and wait at Belt #4 for my 23 kilo bag. It’s spooky. Only 3 other people and zero bags. We take comfort in each other until more people and finally a few bags arrive. And there is my purple one whanging down off the drop.

And now for that special European treat -the taxi ride. I say to myself 50 Euros, $75 CD. And guess what? After being charmed by my lawyer/ taxi driver and after being allowed to choose -highway or grid-locked streets, that is exactly what it costs. But the worst of it is, being Canadian, I tip him.

For part 1 seeĀ