September 11, In the Woods

Today I walked off the trail and into the woods.  Perhaps I had hoped to get lost.  In fact I had hoped to calm down.   There, where things were most green, dark, and wet, and I stood most still, my heart still ached.

The lung specialist had little to say.  He thumped the bottom of his fists over Angela's collar bones and sternum.  He listened to her lungs.  He said he had seen the CT image in question.  He tapped the surface of his iphone entering pertinent variables into an app.  He said that based on Angela's age, and relatively favorable smoking history, the lesion in Angela's right lung has a 42% chance of being malignant.  He acknowledged that Angela's recent history of both cancer and radiation treatment do not figure into this calculation.  He said that his iphone app is proven to be more accurate than a panel of experts so it would be folly for him to speculate on more than the few variables required.   He told us that myeloma does 't usually show up in the lung, so if this is malignant it is likely something else.  He is sending Angela for a CT guided fine needle aspirate biopsy of the lesion.  He has also requested a PET scan for which we will have to go to Ottawa.  This scan will also help differentiate the lesion in her skull.  Both of these investigations will take at least a few of weeks.  Reluctantly, we are waiting.

beavers' pond

Angela sleeps restlessly.  Her appetite is poor.

I am enraged by the very system of which I am a part. These tests should be done already.  This man, preferably, would have gazed into a crystal ball, or read Angela's palm.  I'd prefer a panel of fools at this point to iphone medicine.  The fools, though, are hiding behind their machines.  I have left a number of messages on various phones at the Kingston Cancer Center yesterday.  It seems to me these phones are never answered directly.  I would like some solid dates, and of course I'd like them sooner than later.

The colors around us are changing quickly.  Acorns have been falling on our roof.  Angela, mostly patient, is capturing the changes in photos.  Our morning routines, complete with coffee and foamed milk, remain the same, as does our resolve.  We will keep you posted. 

September 3, Under a Blazing Sky

“I have such a good life.  That’s why I’m crying.  Who would want to give up such a good life?”

There was one day of cloud recently in what has otherwise been glorious weather.  Although we welcomed a little bit of rain, it was on this cloudy day that we received the results of Angela’s most recent scans: “a 2.5 cm lesion in the apex of the right lung suspicious for neoplasm.”  The radiologist recommends a biopsy of this.  She also recommends further investigation of “a lesion potential for myeloma at the vertex of the cranium.” 

Now we are waiting.  We are back to the Cancer Center in Kingston at the end of this week, this time to meet with a lung specialist. 

In the meantime we try not to think. 

Angela paints.  She is working on her largest canvass to date.  Along the very bottom she has painted a few boats tied to a pier.  Originally two of the boats were named “RESCUE,” and above them was a blue sky. 

Enraged, we looked at this image stupidly. 

“I do not need to be rescued,” our bear finally said. 

Now the sky is emblazoned, painted and repainted with variations of red, yellow, green, grey, blue.  The boats too are bolder.  Once named “rescue,” they are now called “COURAGE.”  

When I am not at work I have taken on dumb tasks.  We lost our internet connection recently so I have spent evenings booting and rebooting the modem.  I have jumped through hoops for technicians in India and New Brunswick who take me through various sequences of plugging in and out the modem, router, computer and so on.  The satellite people tell me it’s the router, the router people tell me it’s the modem.  They cannot know what anger I am displacing onto this.  Foolishly, while Angela slept the other day, I drove to Belleville to buy a new router knowing it wouldn’t work.  Finally, I am promised a visit by a technician.  Finally, like Angela, I am also finding courage.

We do not want to jump to conclusions.  We talk casually in the mornings about where we might go for Christmas.  We contemplate the potential for scar tissue and tell ourselves that these lesions may not be what they appear.   Angela reassures us that she feels strong.  Against the CT and x-ray images we have her blazing sky.

I blame the timing of this, in part, on Angela’s lifelong submission to the academic calendar.  We hoped to avoid a return to work this September, but in this, my friends, we know that we are not alone.  We are grateful for the continued words of encouragement that we still receive.  Let us not waste our time on dumb tasks.  Let us not paint things only as they appear.  Let us all return to work however we must, and let us all…be in touch.

August 6, Patio

Saint George and the dragon still clash above our fireplace.  Even in battle the knight's face, and the postures of both combatants, are prayerful and calm.  Like Rocky, though, Angela and I are now spending much less time at the hearth, and more time in the sun.

We visited the radiation oncologist last week.  He tells us that there has been no change on the most recent MRI compared to the last.  This, of course, is very good.  He has ordered a repeat skeletal survey, xrays of the rest of her bones, to be sure the cancer has not taken up elsewhere.  Angela, smiling, tells him not to worry.  She says, for the moment at least, she is feeling better.

It is hard to know if our bear's symptoms have improved.  Her determination, though, has continued.  Still she is up repeatedly in the night to "reposition."  When she is lying down, unless her arms are stretched out straight, they quickly grow numb.  When she drives to town she is sure to nap beforehand lest she fall asleep at the wheel.  There is, still, so much care required for simple tasks.  Irrespective of her persistent symptoms, though, our bear, clearly, is getting stronger.  She is driving herself to town now a few times per week.  She is walking Rocky down the highway a little further each day.  Wherever she goes, however far, she seems now to come back with photos.  She takes her iphone everywhere and pays close attention to everything.  She has captured some remarkable cloud formations, and at least one oddly beautiful insect.

For Angela's birthday yesterday we made a trip to Ottawa to visit the Van Gogh exhibition.  He too was crazy about tree trunks, insects, and clouds.

charity and good homes for old books

We boxed up most of Angela's library recently.  Still she cannot write without tingling and numbness.  She cannot read without sedation.  She cannot do either without a certain amount of grief.  For the moment, at least, we need some space on our shelves.  Today, we are rearranging our furniture.  We have the happy feeling that there remains plenty of space for new things.

We have started, it seems, with canvases. Angela continues to paint.  After some self portraits she has painted a couple of me.  Somehow in the paintings I am restful and calm.  In one I am asleep.  A pillow is under my head.  My eyes are shut.  In another I am slouched in a chair.  Angela, with her painting, is wishing me restful dreams.  It is true that the dragon had tired me out.  In recent months, though, as if to restrict my life as much as Angela's, I have been taking on many more responsibilities in my work.  My workdays are long.  In this way Angela and I retain the same pace.  I am grateful when I am away for the photos she texts to me of the clouds, and of Rocky's shadow on the grass.

We celebrated Angela's birthday last night with some wine.  Happily a glass of wine has become palatable again.  The sun has been beating down heavily on everything this summer.  Happily it seems to have slowed everything down.  We moved from the fireplace to the deck.  Forgetting the dragon for the moment we are toasting Angela's health.  Remembering Saint George we are staying prayerful and calm.

We know it has been a long time since I have written on this blog.  I do not have the strength of Van Gogh, whose paintings I now love, nor of a polar bear, or of Saint George, but I am grateful for our friends, and, ultimately, I will try...to keep you posted.

April 16, Boston

African sculpture at the Boston Museum

angela's take on it

Angela and I returned yesterday from a trip to Boston.  The snow has long since melted from our trail.  The grass in the meadow has become green again.  The leaves on the Poplars are once again rustling in the wind.  Ready or not our bear has been trying to respond to the call of spring.

The warmer temperatures and the early return of so many birds have been helpful, but Angela has been inspired as well by the most recent visits to her doctors.  The radiation oncologist was very enthusiastic about the destruction caused by his beams.  He printed before and after MRI images of Angela's spine and tumour.  Happily, he circled pertinent areas in red ink to add emphasis as he spoke.  Clearly he was impressed by the changes.  True, there remains a mass, maybe a few, but we cannot know as yet what these masses are doing.  If they are still growing the change will not be visible on MRI for several weeks.  This doctor, a true general, will apparently be surprised if the enemy survives such a direct hit by his weapon.  He will nevertheless watch closely.  We will be back for another MRI in June.  In the meantime our medical oncologist is unexcited.  He is looking in a completely different direction anyway for what he expects, at some point, will be the next assault.  Without meeting us he sent his resident in at our last appointment to tell us that Angela's blood work is basically unchanged since our previous visit.  I suppose we will be back for repeat blood work in a few months.   In the meantime I am very proud of my great bear.  Contrary to the medical oncologist's expectations, she has surely levelled deadly blows to the mischiefous dragon!

Somehow a trip seemed necessary.  Should we not be celebrating?  Somehow it seemed right to escape.    We drove to Boston.  Angela could not contemplate being on a plane as yet so we picked a place we could drive to.  We had a few days in a nice hotel.  We had a couple of long walks.  We met with our good friends Catherine, Terry, and Lou who were also there, conveniently, "on business."  We had, once again, and like old times, great laughs.  We did, certainly, a lot more than we might have done only a few weeks ago.  We are prepared to call this progress.  Great progress!

It is understood, of course, that this trip was not altogether easy.  It is understood that there is still pain suffered.  Angela, today, has done very little.  Her arms, unfortunately, are as painful and numb today as ever.  The medications, in a different way, are also numbing.  Victory, to be sure, is relative.

We did not know before we arrived to the city that the Boston Marathon was scheduled for today. On the morning that we left Boston our waiter at breakfast asked Angela if she was in town to run the race.  Although he seemed to immediately understand that this was not likely, he could not take back the question.  Angela was delighted.  "Yes," she said.  "Yes, I am here for the marathon."  She smiled brilliantly and we all had a good laugh.

Spring happily and cruelly has surely arrived.  Our bear, compelled, wills to go further still.  Evidently there will not be progress without pain.   The fight is now a marathon.  We are pacing ourselves.  In time, my friends, we will be in touch.

March 18: Forest Trail

Angela and I are just back from a walk in the woods.  Inspired by such a warm and beautiful day so early in the year we went further than I expected.  Soon after leaving we hung our sweaters and jackets on tree branches and continued in only t-shirts.  However slowly, we walked very triumphantly on the soaked trail.  Still how curious to find, now after many days of warm weather and much rain, patches of ice and snow persisting under our feet.

Angela's most recent MRI results are difficult to interpret.  Apprehensively we visited the neurosurgeon on Thursday to discuss the results.  It is hard to know whether it is a quirk of his personality, or the circumstance itself, that compels this gentleman to shrug his shoulders so often.  He brought the images up on the computer screen and compared the previous MRI to the most recent.  He showed us the space where the body of the first thoracic vertebra should be, and how there is now neither a bone nor a tumour there.  He showed us how the remaining bones and fragments "caved in," more or less, in a stable pattern.  By reference to some obvious kinks in the line of the remaining vertebrae, he reassured himself of the legitimacy of Angela's ongoing complaints of back pain.  "Yes," he said, "one can imagine at least a few nerve roots being squeezed along there."  Proudly, though, he demonstrated how the spinal cord itself is no longer pinched by a tumour.   Hesitatingly, but finally, he showed us a remaining mass, "perhaps 6 or 8 cubic centimetres in volume lateral to the cord, on the left."  "Yes," he said, "that's quite consistent with the numbness you describe in your left hand."

It was about this mass, of course, I felt we should speak.  Is it growing?  Might it still be shrinking?  Does it require further treatment?  To these questions, though, our proud and humble neurosurgeon, speechless, repeatedly shrugged his shoulders.   What he did know with certainty was that surgery, still, was ill advised.  It is simply not likely that with surgery he could get all of the tumour out.  Any surgery, furthermore, is likely to result in more pain and dysfunction rather than less.  "Best not to touch it," he said, and with this in mind he also counselled against physiotherapy for the time being.  "We still don't know if things will get better or worse on their own," he said, "better to watch and wait."

Our neurosurgeon wants to see Angela again in 3 months.  He is managing the spinal column.  He said it was for the oncologists to manage the tumour at this point.  In the meantime, remembering that Angela was "a professor of some type," and as though not to be completely useless, he wondered if hiring a transcriptionist would be helpful.

And so we turn to the oncologists.  Apprehensively, again, we make our next visit to Kingston tomorrow to see the radiation oncologist.

With signs of Spring our bear is coming out of hibernation.  It is no small thing that we managed a walk in the woods today.  It does not matter how slowly and cautiously we walked.  On Friday we managed a trip to the dentist in Toronto.  It does not matter how tiring it was.  Angela is convinced that she can drive safely at this point, if only a short distance.  Although it remains to be seen if she can make it to anywhere meaningful before her hands give out, we will soon give it a try.  She grows tired of isolation too.  Although she wonders how entertaining she can be for guests, with Spring, she hopes she will have more visits.  Winter, it seems, was for stones and orchids, spring, we hope, will be for visits with more friends.

We choose to find solace in the ice and snow on our forest trail.  Though persisting, it is surely melting.  We take hope, for the time being, in the idea that the tumour too might still be melting.  We will, my friends, find out soon enough.   Melting snow, so slow, can, it proves, be painful to chronicle.  We will, nevertheless, do our best.  We will, in continued gratitude, be in touch.

February 21, Atelier

The orchids, miraculously, are thriving.  Joined by hyacinths, violets, and now two vases of tulips, they almost efface the winter seen behind them.

Angela, deceptively, is thriving too.  We were joined by friends both this weekend and the weekend before.   For both occasions Angela discarded her collar, partook of some red wine, and, generally, was in fine form.  During the week, perhaps to oppose as directly as possible her weakening hands, Angela has taken up drawing.  Perhaps to confront as directly as possible her changed and changing features, she has started with a portrait of herself.  The slow lines, produced in steps, as allowed by her poor hands, seem, in drawing, to be less frustrating, more pleasurable, than in writing.

Today the fire is blazing in the fireplace.  After working through the long weekend I have a day of rest.  As I write this Angela sleeps.  Rocky sleeps too.  Still an afternoon nap is inescapable for our Angela.  Still she sleeps on her right side, a pillow between her left arm and her body to keep her shoulder at the right angle, another pillow squeezed under her side behind her to keep her from rolling on her back.  Still, after so many months, the same position.

Angela ran her hand through her hair yesterday to show me how much it is thinning on the right side.  We agreed this was due to so much time against the pillow.  We are not certain why her hair has grown so very little these last few months.  Her thin and irregular hair is one of the features she confronts as she does her self-portrait.  Other features include her swollen face and the surgical scar across her throat.  In the portrait this scar is covered by the plastic collar.  In the portrait as well, I am happy to say, all these features are eclipsed by her beautiful smile.

As I write this it is almost, but not quite, snowing outside.  There are tiny snowflakes widely dispersed that crisscross and, at times, hang motionless in the air.   We do not know what to plan for the spring or summer.  We are still unwilling, it seems, to press our luck.  We look together at Angela's changed and changing features, both in her portrait, and in the mirror.  She worries perhaps that I have not yet seen them, and one day will.  I worry that she will one day fail to see herself, my regal bear, as I do.

In the morning while we drink our coffee we look, at times, beyond the orchids to the frozen meadow. We hang like such melancholy snowflakes in the air.   Thankfully, our friends, there is drawing.  Importantly, there is strength to draw.  There is writing too.  We will keep in touch.

February 5, Bear Trap

We read recently that tomatoes and red wine are protective against cancers.  Poor Angela.  "Who has eaten more tomatoes than me?" she asked.  She did not, of course, even mention the red wine.

The great fight has slowed down considerably.  Angela's pain does not return as violently as it did only a couple of weeks ago.  She sleeps peacefully through the night, and with the most recent change in her medications, her mornings too are more bearable.  Although still compelled to nap for a few hours in the afternoons, she seems, to me at least, to have more energy.

I return home in the evenings with the groceries.  Angela hates that she cannot go for them herself.  She sometimes tears the collar from her neck and triumphantly discards it, but, soon enough, she puts it on again.  Typing still makes the tingling and numbness in her hands worse.  Her general comfort and wakefulness lasts only so long if she does not remain still.  Our bear, with more energy, finds herself, nevertheless, quite trapped.

I, myself, am torn.  I cannot say to what tragedies I have been called to in recent weeks.  It is at once a gift and a curse of my profession that I find myself at times in a position to make a difference for people in anguish.  I cannot go there though, there where people are otherwise alone, there where it it is possible to make a difference, without, to some extent, my mind being stolen.  I am a repository of terrible stories.  Angela, some days, is having to wait.  Trapped, she remains, nevertheless, wonderfully patient.  I arrive home, distracted, with the milk and the honey.  Angela, focused, is ready to help.

Regretfully, I have been unable to write on this blog before these two weeks.   I think, in retrospect, that I had been stolen away.  Joyfully, in the meantime, we have continued to watch British sit-coms.  The great fight, un-ended, has only changed rhythm.  We imagine, like us, the dragon too is torn and resting. We are all catching our breath.  In this we are aided by the many suggestions for opera and television that have been sent to us by our friends.  We are grateful not only for your suggestions but for your patience.  Our bear is not alone.  My friends, let us keep up the fight, and yes, let us be in touch.