Blake No More

Blake 2 days before he fell off his perch

Sunset and evening star
And one clear call for me
Let there be no moaning off the bar
When I set out to sea.

Tennyson

Blake’s last day was devoted to breathing. Three, sometimes four, of us sat beside his bed listening to his breath. We told Blake stories. We laughed quietly. How amazingly, infuriatingly complicated this man had been. How persistent he was even now in spite of agonizing pain that fentanyl and morphine could not entirely subdue, in spite of his failing mind and his inability to communicate.

The nurses came often to keep him comfortable. The doctor came to talk to us. The Salvation Army Chaplain stood quietly with us. We took turns going out to eat. We told more stories.

Blake’s breathing changed. There were long pauses when we thought the worst – or the best depending on your point of view. As the light began to fade over Bloor and Church, there was one last breath. We waited. We nodded to each other. We put comforting hands on his body. We wept silently. After a while one of us went for the nurse.

6:45, Monday, March 19, 2019

There was a glorious red sunset as I rode westward home.

Other posts about Blake and his relentless efforts not to fall off his perch are available at 115journals.com

 

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Comedy is Easy. Dying is Hard.

We were bird people as a family. Too many allergies for furry creatures. There were usually two budgies in a large cage, with names like Pip and Midjbill. And God help the unlucky child who pulled off the cover to find that one of these beauties had fallen off its perch.

As constant readers know, my ex-husband Blake is about to fall off his perch. https://115journals.com/2019/01/26/go-gentle-or-rage-two-ways-of-saying-g

https://115journals.com/2019/02/08/place-your-phone-in-your-shoe-and-move-forward/

https://115journals.com/2019/02/23/blake-there-on-his-sad-height/

He has had an ample allotment of borrowed time. He was diagnosed with stage 4 cancer nearly nine years ago, at the same time as his much younger second wife, and has outlived her by eight. Now that time is running out.

I know about living on borrowed time. I am mostly grateful to have had so much of it myself. Mostly, I am grateful, but possibly, like him, I will not consider it ample when the time comes.

Meanwhile, I have a bit part in Blake’s last great adventure. The experience veers between tragedy and farce. There are heart-rending moments, followed by down-the-rabbit-hole moments, involving, for example, shoe phones.

Stories of families gathering before or in the wake of a patriarch’s death have a common theme. Revelation. Family #1 meets family #2 and all is revealed.

We did that on such a brutal winter night that we were the only people in Milestone’s dining room. All three children were beautiful and bright, mine considerably older than the step-daughter and daughter-in-law. Once they got going, trading stories, I had to put my hand up to get a word in. Blake had changed settings, but not much else. “He did that to you too?” was a common refrain.

Since we were all now having to beg permission from his latest live-in lady to visit him we had started out a little testy. Since we had also spent a week trying to clean up the squalor of their home, we were seriously aggrieved. We didn’t want him to spend his last days like that. On the other hand, we didn’t like being screamed at to leave now, nor to contend with Blake’s desperate cries that we didn’t understand.

At least, I concluded from the family revelations that Blake had risked his step-daughter’s life less often than ours as he sailed Sirocco, the red hulled Northern 39. And anyway, we were willing participants in those cross-lake races through 20-ft waves. Or willing to risk our lives for Blake’s approval at any rate.

For a week, a kind of peace descended as Blake’s grandsons sat with him in his third floor sort of clean room.

Then they were gone. Our son Daniel and I found ourselves beside Blake’s hospital bed with his companion Alice, trying to understand proposed treatment and to inject logic into choices. Pretty much to no avail. Blake intended to go back up to his third floor. It would not be possible to equip it with a hospital bed because of the same narrow stairs that had prevented the paramedics from stretchering him down. He had had to walk down with 10/10 pain. But once his hydro-morphone dose was right, he would go back there and if he chose to, he would drive his car. This last decision led to hard feelings. Daniel and I did not agree that persons on opiates with a weakened back bone should drive.

As a result, Blake and Alice slipped out of the hospital last Saturday and ubered home. (Sans driver’s license, which the doctor had had withdrawn.) She watched him climb back up to his eerie. She reckoned he could have a few more weeks there in the company of his cats, warming his creamed soup up in his microwave and snacking on smoothies from his little fridge.

Until. Until the pain got up to 10 again on Sunday and what should she do. And he wouldn’t get off his wet bed so she could change the sheets. And he was cursing the doctors for not getting the pain meds right.

And I was saying, “Call 911!”

I was trying to shop for groceries. It was the second time in 10 days that I had tried to buy groceries while Alice shouted in my ear buds that she couldn’t handle things.

For the next 2 hours, I fielded phone calls -Alice, Daniel, Julia, our California daughter, Georgia, my sister – all of them several times, each call interrupting another. Texts dinging in as we talked. Daniel was about to go over to Blake’s home and call 911 himself when the palliative care nurse arrived at the house. The last I heard, Blake was allowed 2 more short term hydro-morphone when necessary. He hadn’t taken them. He was sitting up, his pain was 0, and the bed was only a little damp under the clean sheets.

The comic who says, “Dying is easy. Comedy is hard.” hasn’t died recently.

 

 

 

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Blake: there on his ‘sad height’

Blake, on his perch

So the family has come and gone, daughter and grandsons from California and Texas. It went well. Blake basked in their affection.

Now he is in bed #3 on the Elder Care floor of a Toronto hospital, bombed out of his mind on hydro-morphone and offering acute observations: the doctors are being much too cautious; this is a total waste of time; they are not managing his pain – he can still feel it, not a 9 anymore, but even so a 3. In short, he has better things to do.

He sleeps and startles suddenly. “I’m awake,” he says. “What happened?” I ask. “I don’t want to lose control,” he says.

On Monday, the Palliative Care Team will come to assess his needs between 10 a.m. and noon. We will be there – Alice, his friend, Daniel, his son, and me, his ex-wife.

The traffic on this Feb. 23rd, 2019 was brutal. Two hours each way from my western suburb. I listened to David Bowie as I crawled along the Lake Shore. And cried.

 

Place Your Phone in Your Shoe and Move Forward

Blake still perching

So Blake had a medical procedure.

Blake, as followers know, is my ex-husband, who has clung to his perch in spite of stage 4 cancer for the past 8 years.

The procedure involved unconsciousness, an expert with a needle and the spine. Enough to make most people break a sweat. Not curative but an aid to strength and pain relief.

At the same time, his far flung family had decided to come visit while he was well enough. Our daughter had arrived the night before the procedure, and his two grandsons are expected next week.

I elected myself driver in spite of the dreadful weather and my own advanced age, on the grounds that Julia had just landed back in Toronto and needed to reacquaint herself with it before she took the wheel. We picked up Blake and his live-in friend/caretaker. The two women bundled him into the front seat beside me, and we headed across Dundas, that narrow, rail-slick street, across Yonge, University and Spadina, through Chinatown to Toronto Western Hospital. I dropped them at the front door and went in search of parking. It proved to be half a mile away down an icy side street. But this was my beloved Blake, so I limped on.

Needless to say, it took all day. Julia and I were used to surgical waits, so we had come equipped, but his friend Alice had not. While the two of us were content to slip into our books, Alice craved conversation. Not even CP 24, divided screen and all, could engross her.

So we made our way through the day. We had fled the pokey day surgery waiting room after Julia discovered the neurological waiting room with its space and comfort and natural light. Eventually, we were allowed back to sit beside our patient. Time passed. Shifts ended. The doctor was paged many times. We did our best to keep Blake’s spirits up. He confessed to feeling depressed. I suffered ever decreasing blood pressure from sitting and dehydration. At the point where I felt as if I needed a gurney myself, he was suddenly released. Julia went off to the lobby to deposit a loonie and get Blake a wheelchair.

Wait! What!

Yes, dear reader. We were not in Valencia nor even Bakersfield anymore. We were in good old Canader where you don’t get a hospital bill but you do have to pitch in.

I reversed my slippery walk, paid $25 for parking, wended my way down snow-filled one way streets and arrived back at the covered entrance. And waited. And waited. And waited. And had horns blown at me. And waited.

Then Alice called. Blake’s phone was missing. I hadn’t seen his phone. Alice hadn’t seen his phone nor had Julia. But Blake swore he had put it in his shoe, which he and Julia had locked up with the rest of his clothes. When they came back to post-op, I sat beside these shoes, 10 1/2 white trainers with velcro fasteners. I had not seen a phone in either one. So – God forgive us – we told him it must be at home. Well, they told him, because he adamantly refused to be wheeled out of the lobby and I was still deep- breathing while blocking traffic.

Both Julia and Alice called his phone repeatedly while Julia raced back up to Day Surgery and searched. Everywhere. No ringing cell phone to be found.

When Julia wrestled him back into the car, Blake was spitting mad at the three women who were calling him demented and he unafraid to express it.

But it’s an old phone that needs to be replaced and surely he – a computer expert – had backed it up. No, he hadn’t. His life was lost.

I wound my snowy way down the back streets and out into the rush hour traffic and construction of an ever darker, wetter Dundas St. Voices were raised.

At last, I found my way down to Schuter so that I could turn back north onto Blake’s one-way street. I heaved the car up over a snow berm and sat there, while Julia levered Blake out of the car. I was breathing deeply when the dashboard indicated an incoming call. From Blake’s phone. Ah, we were right! It had been at home all along.

But no, dear reader.

Upon entering the house, Alice began calling Blake’s phone. Blake was sitting on the stairs. Alice was up on the landing. Julia was just inside the door. They listened to the ringing. It seemed very close. It was Julia who worked it out.

“Your foot is ringing,” she said.

They began to pry off his right shoe. As it came loose, it glowed bluely deep within.

Go Gentle or Rage: two ways of saying good night

And you, my father, there on that sad height
Curse, bless me now with your fierce tears, I pray
Do not go gentle into that good night
Rage, rage against the dying of the light.

Dylan Thomas

Many people visit this blog –115journals.com – for one reason to get some help understanding Eleanor Catton’s enigmatic novel, The Luminairies. Ms. Catton has not expressed an opinion on my interpretation, and if she decided to do so now, I would probably not get it, just as I can no longer answer questions about the book itself. https://115journals.com/2018/09/08/what-i-once-knew-anglo-saxon-algebra-and-the-luminaries/

Others of the 300 followers catch more recent posts in their Reader or by email. Some have become familiar with my family and its ups and downs. The cast of characters include my sister Georgia here in the western suburb of Toronto and her tribe of children, my Brussels’ brother, my California daughter – she of the differential diagnosis, https://115journals.com/2018/11/08/all-is-well-differential-diagnosis/ and, of course, Blake, my ex-husband. https://115journals.com/2018/09/07/good-eggs-john-burt-and-me/

The bottom line is that Blake’s losing his grip on his perch.

Blake still perching

Returning from my recent sojourn in the Kern County Mountains of Southern California, I found him mostly confined to his third floor bedroom in downtown Toronto. It had come on him suddenly, he confided. He hadn’t had time to see to things, do that Swedish death-cleaning thing, for example.

It’s a religion to me, constantly weeding my possessions, my unworn clothes, books I no longer read, geegaws that never see the light of day, papers. I spent a morning shredding as I tried to get oriented back into my life here in Mississauga.

Blake mentioned this because he is going to leave me, his executor, to deal with a house crammed full of stuff.

I refrained from pointing out that he had had stage 4 cancer since 2010. On the other hand, he had been sailing and cruising and zip-lining through jungles and zooming down water slides until this last summer. And he has always expressed the desire to live forever. He has that optimistic turn of mind.

It appalls me. But then I have grown old in spite of that. https://115journals.com/2018/12/27/when-i-get-older-the-hundred-year-old-man-who-climbed-out/

Turns out, he’s been so busy and then so suddenly sick that he now needs a small army of relatives to clear enough space and clean enough space for him to enjoy what’s left of his time on his perch. The troops are rallying. Just don’t suggest cleaning crews. It’s more piecemeal and personal. “What is this pile?” is the current question. Could be important. Could be wash.

Then there’s the pup, a sheba inu. “Say goodbye to her,” Blake advised, implying she might be gone next time.. I thought to myself, “I said hello and  got no sign of life.” I bent down to bid the pup farewell.

Today we got the vacuum working and took up the worst of the animal hair and the autumn leaves and pet food around the bedroom. (Yes, there is a balcony.) We changed the sheets. Do many people store their sheets in tightly wound balls in linen cupboards?

Our son Daniel has pledged to install a grab rail over the tub/shower and hand rails on the steep, narrow stairs.

Our daughter and our younger grandson plan to fly out of LAX as soon as his expedited passport comes through.

Blake’s step-daughter beat us all by getting there last week and pledges to carry her weight.

Blake is very grateful to me and happy when my brother Facetimes from Belgium, but he is grumpy with his companion. He was only moderately pleased when the U.S shutdown ended today. He would be happy if only he could outlive Trump’s reign, which he sees as a threat to the world order established by the Second War, his war, the war he was refugee-ed out of at the age of 5, without parents.

In our 25 years together we were intellectual snobs. Orphaned and outsiders, we said, “Living well was the best revenge.” Then after Europe and the energy crisis, “Eating well is the best revenge.” In the 40 years since we parted, our paths diverged apparently.

I said earlier in the week, you’re going to get to go home. You haven’t been home for a long time. No, he didn’t believe that. Dead was dead. “And you a physicist!” I said. “A physicist who believes that all this loving energy can be destroyed?” “Well,” he allowed, “it is an unbelievable miracle that the human race evolved out of nothing.” “I always thought that about our children,” I said. “They came out of nothing but love.”

They are still coming, fourth generation beings who will carry us into 2100.

The One Thing You Must Never Forget to Do: contradicting despair

The Talmud tells us, You are not obligated/ to complete the work/but neither are you free/to abandon it.

The poet Rumi tells us, There is one thing in the world you must never forget to do.

Aunt Mae told me, Joycey don’t take it so to heart. She said there were millions of people of goodwill and they were all working hard. Then she cackled her uproarious laughter, she who could see the future and pronounce, “It ain’t much.” no matter the disaster. But then she said the same about death itself.

So now I near the end of my time here in the California mountains with Patient # 1 and Patient #2. https://115journals.com/2018/12/04/what-the-candle-said-caring-and-melting/ Both declare they are well and self-sufficient. One is certainly on her way there, but the other is probably on a down-bound train. No matter, I have my marching orders.

As I prepare to take up my own life again, I am doing what Mae said not to. Taking it all to heart. Taking myself too seriously. Midnight, i.e. 3 a.m., January 1, 2019, found me sleepless and full of grief and self-loathing. What did I have to show for my effort and expense? The feedback had not been encouraging. And I was as tired as an 82-year-old awake on top of a dark mountain in the bleak mid winter.

I know that the wise drag their wisdom up out of the darkness. I have watched my dear Patient #1 do this literally, coming back from unconsciousness many times, one a particularly long and perilous journey. I have done so myself. And, my elderly friend, Patient #2, is facing it daily, as age limits her senses and her scope of activity.

I have written about my grandmother in her old age wondering why she was still here. https://115journals.com/2018/12/27/when-i-get-older-the-hundred-year-old-man-who-climbed-out/ For two months, I have not had cause to question that. I was here to help. I always knew I had to stay alive in case of contingency. I’m not sure how many more contingencies I have left in me, but then I could have sworn I didn’t have the wherewithal for this one either.

My life on the 14th floor in a Toronto suburb feels distant and unreal, the desk in front the floor to ceiling window, a writer’s desk, the walls vivid with my sister’s paintings, the bedroom, curtained and warm where books wait to be read, the little kitchen where alchemy occurs. The silence.

All those shortened lines of energy, the physical bonds that are so present here will have to stretch across a continent. Technology makes it easier.

At first, I will have to catch up on all those appointments I cancelled in October and go gathering and hunting to fill the fridge. I’ll have to relearn how to sleep in a light-filled city. For a while, I will have to be Patient #3. She needs my help.

                     

When I Get Older-: the hundred year old man who climbed out…

It was 1967 and like all good Canadians, my husband and I had set out to show our 100- year-old country to our young children. We were on our way back from the east coast when we stopped at my grandparents’ farm is Quebec. The next afternoon, we got a call on the party line: could my 33-yr-old husband go up to my great aunt’s farm to help get the last load of hay in before the threatening storm broke. He set off, eager to give himself a workout after days of driving.

While we were eating supper a few hours later, he burst through the door from the woodshed. “You’d never believe it,” he cried. “There was an 88-yr-old woman driving the tractor. A 78-yr-old woman up on the hay wagon and a 71-yr-old man pitching the hay up.”

We turned to stare in incomprehension. Yes, and …

That was my grandmother’s sister, Eva, driving, not an actual tractor, but an very old stripped down Ford pickup, my other grandmother’s sister, Betsy, building the load and her husband, Ralph, pitching up. They hayed every year. Evidently, an outsider regarded such work as beyond the elderly.

I never worried about having to work hard when I got old. I never expected to get old. I almost exited when I was two weeks old, and again when I was starting school at six. That was only the beginning of my almost ends. Then, suddenly, I woke up one day to discover that I was almost as old as Aunt Eva, the tractor driver. The young husband, no longer mine, was even closer to Eva’s age. What’s more I found myself in the unlikely role of caregiver to a 90-yr-old friend. When she handed me a beat-up copy of Jonas Jonasson’s novel, The Hundred Year Old Man Who Climbed out the Window and Disappeared, she said, “I couldn’t get into it.”

The hundred-year-old man is Allan Karlson, a Swede – the novel is translated – who was born in 1905.

My grandmother, Eva’s sister, was born in 1900, and much to her chagrin, she lived to be 96. For at least 20 years, she went about wondering out loud why she was still here. I found this alarming, but I couldn’t convey to her how she was the center of the world for me, and, I suspected for all the other grandchildren she was so fond of enumerating. Not having her would be like not having the earth’s axis.

She lived within the same ten square miles her entire life. She never traveled farther away than 500 hundred miles. She had five children, three of them were born after me, her first grandchild, and two of these were twins. When she was already a grandmother, she had three babies. Diapers had to be washed then. She had no electricity, a tin tub with a wash board and only a clothes line for drying. Or – when she got desperate – she hung the damned things over the wood stove.

Allan Karlson, the Jonasson’s hero, who lived to be 100, had a much more exciting life. At the age of 10, he went to work in a nitroglycerine factory and taught himself to be an explosives expert. So much so, that he ended up helping out, in a strictly informal if significant way, at Las Alamos. He had already met General Franco in the Spanish Civil War before he met Harry Truman on the day President Roosevelt died. He went on to meet Churchill, de Gaulle, LBJ, Stalin, among other heads of state, and to intervene, however inadvertently, at crucial points in history. He learned many languages, spent long periods in various prison camps, walked across the Himalayas and blew things up just to be helpful. In short, he had the fabulous adventures that only a character in a satire can have. On the last page – spoiler alert – he finally overcomes the forced castration he suffered in his 20s.

The Hundred Year Old Man Who... is the work of a vivid and quirky imagination but it also contains insight: “The following spring he would be seventy-eight, and Allan realized that he had gotten old against all odds and without having thought about it.”

Exactly.

Meanwhile, my ninety-year-old friend has had her car keys confiscated. I’m pretty sure she had been driving for awhile with no idea of which dial was the speedometer. She is not happy to have her independence curtailed. Me neither. Everyday, I find myself driving her wherever her whim takes us. My dear friend with her sparkling blue eyes and her ready wit has to have me identify friends we meet in our forays, and all our conversations are conducted at the top of my lungs. Don’t talk about hearing aids, please. They are tiny, the batteries are impossible to change and they have feedback. She dreads the loss of her short term memory. Too late.

My once young husband has run through every treatment for his stage 4 cancer in the last ten years, and reports that he is unaccountably tired. He speculates that he may have to give up flying to Miami for Caribbean cruises or at least stop zip-lining in ports of call.

I have never been robust (see exit above). Unlike my friend and my ex-husband, I have spent my life not feeling up to par. I have numerous vertical and horizontal scars. I have to eat carefully, exercise carefully and rest half of every day. Yet here I am, completely unfit for the task, but still pitching hay.

What the Candle Said: caring and melting

A candle as it diminishes
explains, Gathering more and more is not the way.
Burn, become light and heat and help. Melt.

Rumi (trans. Coleman Barks ‘Light over this Plain”

The candle gives good advice. Surely, such advice needs to be treated seriously, not ironically. Easy enough to post. Might even help somebody on her way. And there’s even a free candle picture to pretty things up.

But then – gaaaaaa – you find yourself screaming, “I’m melting! I’m melting!” like the Wicked Witch of the West doused with a bucket of water.

Age was melting me before I undertook this project. For the last four years, I have paid a younger woman to clean my apartment every two weeks, first Teresa and then Louisa. I could have been Teresa’s mother and Louisa’s grandmother, but these women brought not only their Portuguese cleaning skills – lots of vinegar and elbow grease – but also their warmth. They looked out for me.

Then I got the call. Invalid 1 was immobilized by pain and might or might not be mortally ill. What’s more Invalid 1 had assumed the care of Invalid 2 during the summer. Although she is in good health, Invalid 2 is even older than me and about to become a nonagenarian.

We’re short on available help as most families are these days. In my day, as we oldsters say, there were spare spinsters about the place, who would come and sleep in the single bed or on the couch and take on the nursing and housework. Not an unattached auntie to be found in our case, not even a biddable if somewhat challenged cousin. Moreover, we are scattered across the continent and those of us in healthcare are gainfully employed.

So I sallied forth. I flew out the next day (115journals.com/2018/10/24/mother-on-broomstick-celebrates-legal-weed/). Like many other mothers, I had already had practice answering such calls. I picture these mothers driving alone in cars, on planes, on charabancs, on buses and trains, sharing space with life stock when necessary, beating a path toward the need.

Invalid 1, my daughter, had been making the shorter trip to Invalid 2, her mother-in-law, daily, for several months and she had developed a real knack for it. She sort of sank into the whole experience. Patience wasn’t even required anymore. It took as long as it took, getting the house in order, checking the fridge for spoilage, making lunch, sitting and listening to the older woman, watching Dr, Phil at 3 o’clock.

Too bad this zen-like helper was now bedridden and had become the lump on the couch, as I affectionately called her.

For the first while, I saw my main task as taking care of her. Her mother-in-law, meanwhile drew on her own strength to manage better than we thought possible.

As time passed, my daughter’s diagnosis became clearer. (115journals.com/2018/11/08/all-is-well-differential-diagnosis/) and surgery got her on her feet. In little more than a week, she was back looking after Other Mom, while I watched in awe. And yes, she got what the candle was saying.

Me? I am melting. My share of the duties doesn’t seem onerous. I don’t even have to cook. Hubby does that. I do the wash and try to keep the place moderately clean. I go to appointments with her – she has to have a second surgery. I used to do all these jobs, work a full day and even give the occasional nod to my children. It’s humbling to take measure of my diminished ability.

The thing is, as soon as I arrived, even though she thought she had a dire diagnosis, she began to laugh. She was better just because I came.

And that is what love is after all. You give what you can. If there’s nothing left, you’re all the better for it.

 

 

 

 

Thanks Giving in Buffalo Wallow

Of course, I’m not really in Buffalo Wallow, which must be somewhere in flatland. I’m up here on a pine mountain in the ancient land of the Chumash, who regarded it as the center of the world. Apparently, a Chumash trickster spirit, Coyote, or whatever he calls himself has been toying with us, so my gratitude this day is a little skewed.

I am grateful that Ikea’s designated delivery company finally delivered the bed. I bought it on Oct 23 by phone while I was still in Canada. I was told the first delivery date possible on this remote mountain in California was Nov. 8. This remote mountain is 40 minutes up the I-5 from the Ikea distribution center in El Tejon. While I slept on a mattress on the floor, my bed sped past me down the I-5 and came to rest in a warehouse south of Los Angeles, where it sat in a tight roll and disassembled pieces. Meanwhile my 82-year-pld body lay in a tight roll trying not to disassemble in agony. I missed the delivery date – they had been phoning my Canadian landline, but I am grateful that they delivered it on Veterans Day. I am also grateful that my daughter’s good-man-good assembled it with only minimum  damage to his body. So he says. I try to believe him.

It is 10 days later, my body is beginning to unwind.

Meanwhile, Mr Coyote’s trick involved a whole raft of medical specialists – general surgeons, radiologists, ear, nose and throat fellows, urologists, neurosurgeons, pain specialists, and a raft of CT scans, x-rays, MRIs, blood tests, cell cultures and biopsies. The diagnosis was kidney cancer, then metastatic kidney cancer, then benign tumor and early stage kidney cancer, then two benign tumors, one kidney, with a dissenting vote from the radiologist, who’s still got his money on the big C.

Update: a neurosurgeon has removed one tumor and it seems as though years of sciatic pain and months of insomnia have been cured. So thank you, Dr. Liker and all those friendly nurses at Henry Mayo.

Next stop, the urologist.

 

 

 

All is Well: differential diagnosis

115journals.com/2018/10/06/all-is-well-another-contradiction-to-despair/

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”