November 27, The Beach

Angela has been here in Springbrook for the weekend.  I went to Toronto yesterday to empty our apartment which we have managed to rent out for December 1st.  I thought I could get in late and out early, but nothing in this move worked as I expected.  Many hours late on my return, fate and circumstance have made a fool of me again.  Nevertheless, our apartment is now empty, and there is a feeling that a chapter in our life together has been interrupted.

I am happy to find Angela appearing quite well on my return.  Her couch, well appointed with pillows, is positioned squarely in front of the fireplace.  She had me relocate many of the ornaments of this room to more distant places of the house.  These were primarily the figurines and images of domesticated and grass-eating animals.   There were more of them in this room than I had previously been aware of, but, with care, I was able to find respectable places for all of them, elsewhere.  Here, around the hearth, is where the bear is resting.  This is no place for hens or gazelles.  In their place, we now have some Inuit art: graceful, dancing, beautiful, and vicious men, spirits, and bears, each shaped out of stones and bones.  I find Angela protected, quiet, and restful.

This serenity is owing, in part, to two days now without treatments during which mounting side effects do seem to plateau or abate.  Still, in the general course of things, moments of anguish are more intense.  Swallowing, in particular, is becoming a problem.  Through sobs yesterday, when I found her agitated in the very early morning, she insisted she would not swallow any more medication.   It was still dark, and Angela was crazy.  "How can music exist?" she asked.   I was crazy too, but together, we did well.  We found that a mortar and pestle, even at 5 a.m., still crush medications quite adequately.  We also found that warm milk added to an egg that has been stirred with honey, still, just as her grandmother had advised her, both soothes an ailing throat, and tastes okay.

I am glad to say that we are, for the most part, finding "solutions," such that serenity, and even good cheer, still dominate in our home.  I can relay that after our moment of anguish yesterday morning Angela  slept most peacefully.  She woke to describe a dream in which she was learning to swim.  Afraid, she was being reassured by her instructor that she would be okay.  He would let her go, but she would be okay.  Angela was delighted upon waking to say that, with her instructors care, she soon felt very safe.  She was ready to swim, but, nevertheless, he did not let go.  I, of course, was completely delighted to hear this, and to know that in this dream the instructor was me.  Later, with the bear lying on the couch, we listened to music from a Mahler opera.

This evening we are continuing with milk, egg, and honey.  I will bring Angela to Kingston in the morning to resume her treatments.  I'm in Belleville during the day, Kingston tomorrow night, then back to Belleville, Springbrook, Bankroft, and so on.  On these travels I, like Angela, am comforted in the knowledge that we are held in mind by so many friends with whom...we will be in touch.

November 24, Highway

With the ribbon and bear around her neck, a tuft of now partially coloured blue hair sticking up from her head, the plastic, stiff-neck collar pushing up at her ears, and a bib tucked under her collar at her chest to protect her skin from the plastic, Angela has recently taken on the full likeness of a Shaman. When I tell her this, she is delighted. "Well, at times like this you have to stay close to your foundations."

She is certainly contesting with a trickster. The tumour in her back is at the same time compromising, and sparing her spinal cord. It has destroyed one of her vertebra, so it is at the same time threatening, and supporting her spinal column. I get lost in my contemplations of the potential complications of this. The surgeon is unwilling to speculate aloud. He shrugs his shoulders. He says, however reassuringly to himself and to us, that the body can sometimes adjust "in miraculous ways."

So far so good. Her neurological symptoms are stable. Her pain is no worse.

I am trying to adopt, as much as I can, Angela's shamanistic ways. I found myself in Bancroft yesterday, which is an hour drive north of Springbrook. I do a clinic there on Wednesdays. Because it had snowed the night before, everything, on the drive up, was frozen, and still. Such a desolate road. It is so long, and quiet, in fact, that by the time I get there, I am baffled that Bancroft exists. Who lives up here? Why? Of course it is the privilege of my profession that I spend my time meeting people, and so it was only a matter of time yesterday before this strange place became very human, and very real, but, for that matter, even more baffling. Yes, life exceeds my imagination everywhere I look! In this, I choose to take hope.

I remain in contact with Angela all day. We are throwing crazy words back and forth through "text messaging." Even brief indecipherable messages are helpful, her humour and determined spirit come through even there. I am stealing time between patients today to write this post. I've become very grateful for words. So, friends, I will continue to do my best...to keep in touch.

November 21, Lake View

Angela's hotel room this week looks onto the lake.   There is a series of docks beneath us, and across the straight there is an island of windmills.  Looking out the window Angela is very pleased.  She announces, "This ferry is me.  This is me."

She has been looking very closely at objects.  This weekend she found a small bear that has been on our shelves for years.  It is a polar bear carved out of white stone.  There is a small jewel missing from its back.  This bear too is Angela.  She tied thread and beads around its neck and sewed ribbon to it.  She now wears it around herself as a neckless.  In fact its remarkable what expression this tiny, stone bear has.  I now refer to Angela as "the bear."

The bear's symptoms have generally been stable.  She is grateful to have had two days without treatment.   Although odd things are happening in her back today ("It tenses and relaxes mindlessly...maybe its the tumour.") I rest my mind on the fact that Angela is very well in spirit, her pain is controlled, and the weakness in her arms may even be improving.

Looking ahead, we are indeed dreaming of some form of restful hybernation for Angela.  She will be here in the hotel with her bear.  I, on the other hand, object of necessity, am intent on busying myself.  I will be going to Toronto tomorrow for a few hours, among other things to make arrangements for our apartment there, which we intend to empty and sublet, but also to pick up essential supplies from L'Occitane.  On Wednesday I'll be returning to work.  I expect I will be commuting to Belleville, now from Kingston, now from Springbrook, for the time being.  It remains to be seen how I will manage, but presently I am optimistic.  First of all, Angela and I are not alone.  We were cared for this weekend by my father, and also by my brother Greg and his wife, Robyn, who are here for a few days, and who prepared the most scrumptious and elaborate of meals last night.  Angela has promises of visits through the week.  Also, though, I am not without my own "fidelity to things."  I will be carrying my own stone bear secretly around my neck.  We'll keep you posted.

November 19, Springbrook

My friends, let us all be thankful for weekends.  Today we find ourselves home in Springbrook.  Although we briefly questioned the wisdom of being so far from the hospital, and we wondered how Angela's back would endure an hour and a half in a car, ultimately, we really didn't care.  Being here is a true blessing.  We count ourselves as very fortunate.  It is the most recurrent theme for us yesterday and today, that of how lucky we are.  We are positively moved to tears at times to think of what we have.   Well beyond the hotel room, and the pastries from Pan Chancho (the best that Kingston has to offer), there is now the comforts of a beautiful home, warmed by a fire in the fireplace, and looking onto both a meadow and a beautiful forest.

Our home, now, is most importantly a place to rest.  For Angela, fatigue is becoming more prominent, but she is at the same time very restless due to steroids, hunger, and pain.  She is awake every hour at night.  She continues to accept the side-effects of her treatments as necessary evils.  She wears her stif-neck collar happily.  Still we look at the consent form that she signed in the hospital with a curious mix of fear and amusement, such modest goals, "to improve the chances of local control," and such devastating "potential" consequences such as paralysis and secondary cancers.

We will not, of course,  leave the outcomes to these matters to chance alone.  It is in part because of occasional esophageal pain which Angela now refers to as an arrow, now as an axe in her chest, that we removed the images of St. Sebastien from our walls.  We prefer St. George whose spear points in a more favourable direction.  We have a beautiful print of Kandinsky's St George Vanquishing the Dragon above our fireplace.  From this Saint we will draw inspiration this weekend, and to him we will place our prayers.  We pray to make ourselves worthy of our good fortunes so we can live this misfortune well...and better it!  So far so good.  We will keep in touch.

November 17, The New Normal

The hotel room has not yet returned to its mediocrity.  There remains many moments, when we feel, very oddly, like we are on vacation.  There is a continental breakfast served in the lounge downstairs, fresh towels in the morning, and a maid service sign to hang on the doorknob, all signs of a holiday.  This evening we had take-out food again.  

It is somehow amazing to me that I was able to leave here today, and leave Angela, to return home to Springbrook for a few hours.  Only a few days ago we were fearing a catastrophe at any moment.  Yesterday there was a kind of spell that I did not want ever to be broken.  Today Angela's symptoms are "stable" again.  There is no more or less pain, weakness, or numbness in her arms or hands.  She has been more fatigued today, spending most of it in bed.  She now fears esophageal spasms, and, rightly or wrongly, she is more tentative about what she eats.  But no drama.

I found myself at home looking through the mail.  I appraised our food supplies.  We will especially need cat food right away.  I'll need to make an appointment for the snow tires.  I am now afraid of losing time, but I have to think about other things.  Soon, it would seem, I will be working in Belleville, and Angela will be in Kingston, in the Confederation Hotel, back and forth for radiation treatments.  This is the new normal.  It is very hard to know how vigilant we should be.   It is still hard to contemplate the uncertainties, and to think what all this "means." This is why we are somehow grateful to be taken up by the mail, the need for cat food, and the need to stay on track with Angela's pills and appointments.  We are expecting highs and lows in the weeks and months to come, but we'll enjoy the highs, suffer the lows, and do what we have to do.

On the way home to Springbrook with my father today we picked up Rocky from Camp Bark and Meow, and I imagine he is right now stretched out in front of the fireplace where he belongs.  Angela and I are together in the hotel.  The vacation continues for the moment.  It remains very nice to know that we are held in mind by so many friends.  We'll keep in touch.

November 16, Confederation Hotel (Paradise)

Angela walked into the lobby of the confederation hotel today with an absolutely glowing smile.  The man at reception told her he was giving her a "very good room."  When she asked, "how good?" he said that he would give the room "an eight out of ten."  She replied, with a thumbs up and a wink, "I'll give it a ten!"

Having left room number 361 of Kingston General Hospital neurosurgery ward, room number 314 of Confederation Hotel is nothing less than perfect.  I cannot describe what a happy afternoon we had.  So quiet!

Angela's symptoms are stable.  Her pain and weakness are no more or less than yesterday.  She is now developing nausea but she "thinks nothing of it."  She is awake with a voracious appetite at night, and has welcomed even rice crispies in the morning, but she is happy she can enjoy even cereal.

It is definitely not lost on us what has made this simple hotel room so miraculous.  It was less than two weeks ago when we were told by her family doctor that we needed to get to Kingston emergency department urgently.  A neurosurgeon in Toronto had viewed Angela's MRI and said that surgery needed to be done within 24 to 48 hours.  We packed next to nothing.  What a long and terrible drive.  It was a different type of quiet.  We vowed to each other to be strong.  Such a violent and recent shock, it has been hard to accommodate since, even to the many positive "results" that have come up.  At that moment, as much as we hoped, we did not dare expect that we would be out of the hospital so soon.  Truly the arrival to the hotel, and these hours after, are a triumph.

The afternoon ended with Angela's return to the hospital for her fourth radiation treatment.  After the treatment she suffered a brief but very painful spasm in her esophagus.  This, however, did not spoil our "celebration."   We insist!  We enjoyed take out pizza tonight with my father who just arrived.  Afterward we watched some tv.  Then we wept a little bit.  All part of unwinding.  Thinking of our  drive into the city not two weeks ago, I am very grateful our journey is already longer than we feared.  Three steps forward, two steps back is progress!  I'll keep you posted.

November 15, Bird's Nest

Angela's treatments are having some effect.  She is reporting enthusiastically that there is more pain and weakness in her arms.  She is also more tired.  "Well," she says, "at least I know they're shining more than a flashlight on me everyday."

Because we have been told to expect these "worsenings" in the short term, we are claiming them as signs of progress.  They certainly have not deterred Angela in her intentions to get out of hospital.  She is now an unflinching advocate for her own discharge.

The window sill in Angela's hospital room is lined with flowers that have been sent from near and far.  There is a picture tacked to the wall at the foot of her bed drawn in the brightest colours by her young, and most affectionate godson, Marius.  We have become very meticulous about the placement of her things in her small space.  The aforementioned ipod with Proust is nearby with her lipstick, cream, and a cahier.  We've come to refer to her space here as her nest.  The hospital, itself, though, is more and more referred to with other terms.  In tears last evening she demanded that I understand that she is in a concentration camp.  Indeed there are Nazis around us all, at all times, but here, and as time goes by, it is the Nazis that take on a more prominent presence.  How horrific, the way that institutional processes and spaces, turn nurses, who are really angels, into police.  I have many times, in my own work, a subject of the institution, become monstrous to myself.  So our true haven, which is not a concentration camp, is at the same time, quite hard to bare.  There is little protection from the cries at night.

So I am right with her, Angela that is, in her present effort to get out.  Treatment is now started.  Although her symptoms have worsened, unless there is a "dramatic" change, surgery is being postponed.  Yes, we need to watch closely, because some drama is not out of the question in the next few days, but even as an outpatient she will be returning daily for treatment.  It does not hurt to have a doctor at home and by her side, either.  So our plan now is to move Angela's nest to a nearby hotel. As a new member of the "cancer society" her room will be "taken care of."  Arrangements may be ready as early as tomorrow.

In the meantime, todays radiation treatment is still to be done.  Of course we pray her symptoms don't get worse still.  It begins to dawn on me, happily in fact, that we will have yet alot of work to do.  I will need to balance our life to sustain us both for the course of her treatment.  For this I am well trained, well supported, and strongly willed...and I believe in the value of a good nest!  I will thank my father in advance who is on his way to take care of our nest in springbrook.  I thank you all as well for your continuing comments and encouragement, whether public or private, as they are a true pleasure to Angela and to me.  I'll keep in touch.

November 14, Military Chapel

We are resting after Angela's second radiation treatment today.  We can recommend Proust at times like these.  Our good friends from Montreal left Angela with an ipod complete with Proust on audio book format.  Such a thoughtful gift!  She finds it very soothing, and even now wears a pleasant smile as she listens to it.  I will return to my hotel at night much easier knowing she is in the best of company.

I had my own proustian moment while waiting for Angela in the radiation department.  I was washed over by childhood memories that related to military chapels.  I realized that the department shared such resemblances to the chapels my family attended on military stations over the years.  Both somehow occupy the same space, not quite military, not quite church, but somewhere in between.  Indeed, I have visited a real church very recently, a moment of true suffering, as I found myself at once comforted by and horrified by the idea that this could one day be the only place left for communion with my Angela.  It is not lost on me that it is no small thing to pray, and so I am inspired by the many of those among us who have been trying.

Some good news today is that Angela's cancer is not quite multiple myeloma.  At the same time, however, it is not quite not multiple myeloma.   What we understand from the tests is that there is no evidence as yet of cancer anywhere but in the one vertebra, but this now solitary tumor is sending chemical messages out for other bones to join it.  Because we cannot be certain that other bones have not as yet answered this call, the medical oncologists will be following closely with regular tests and there is a likelihood that chemotherapy will be part of treatment, probably after radiation.

We choose to take this news as good.  We choose to believe that our prayers are working.  I am peeved, however, with Lars von Trier who has been too happy to remind us, in his show The Kingdom, that "We must take the good...with the evil."

Let's, for now, stick with proust, my friends, rather than the Dane.  And let's keep in touch.

P.S. I have adjusted the settings on the site to make it easier for anyone to comment.  I'm sorry that some of you have been blocked.  Credit to samenessless who in his sleepnessless does indeed seem to be posting at a very early hour, and many thanks from >a< to you.

November 13, Radisson Hotel

It has been a good weekend.  To have a couple of days without tests is already something.  Add to this the side effects of high dose steroids (increased energy and appetite), very good pain control, a better fitting neck brace, and the opportunity to take angela to the hotel for a few hours both yesterday and today, and it suddenly feels as though we have the upper hand.  One of our good luck charms, loulou, visited with her parents from montreal.  Together we had splendid meals, both last evening, and again this afternoon.  Joining us for lunch were flo and olga who also drove all the way in from montreal. Angela, amazingly, has been in fine form.  She had many laughs this weekend.  Even I found my worries somehow suspended for a few moments here and there.

The breaks from the hospital were essential.  The extended exposure to the madnesses of the hospital is maddening in itself.  We have both cracked up here and there.  I myself lost my cool last night with a nurse and will have to apologize to her at some point for swearing at her.  There are just too many stupidities in hospitals, not to mention absurdities, or even, perhaps most importantly, tragedies.  These things weigh heavy on me at the best of times, so it does not help that I am "used" to them from my work and training.  Under present circumstances I have clearly been growing tired.  This is why it has been so good to have this weekend and some "breaks" from it all.  Still how weird and eerie to enjoy some laughs and have angela "home" and appear so normal when I know at the same time that there is a tumor pinching her spinal cord, and when we have been warned that the radiation therapy will likely cause swelling in the next few days before "alleviation."  Nevertheless, despite the many variables that remain "in the air," or perhaps because there are just too many of them to think through, we trust in our feelings.  Presently I am feeling very optimistic.

Angela fell asleep almost immediately after our visitors departed.  She has always valued an afternoon sleep as highly as red wine.  We are glad to know she will be well rested for the coming days.  I too will try to have an earlier night.  Let's keep in touch.

November 11, Kingston General Hospital

Let's try blogging. Today we are all in favor of technology. Angela had her first radiation treatment yesterday. She was first wheeled into the technologists' suite to be shown all of the monitors and equipment. The radiation therapists expected, not mistakenly, that the wall of monitors would be both impressive and reassuring to the patient (and her young husband). Angela's eyes lit up and focussed on one monitor in particular. "Is that my skeleton?" she asked. "Ah, now wouldn't you say those are good looking shoulders." When all agreed that her X-ray image was particularly striking, she said "yes, it's good to know I look good as a skeleton...did you see how long my neck is?"

We,in fact, were very grateful for the kindness provided during her treatment yesterday.

Today we are certainly more hopeful compared to last week. Although this tumor is compressing her spinal cord, and is in a tough spot for surgery, it seems at least that it is a solitary tumor and there is a good chance that radiation can shrink it. If the results of her bone marrow and tumor biopsy come back as we hope then there is a good chance that radiation can eliminate it. Also in our favor is the exceptional fortitude of our patient which comes mostly from the great love and affection she holds for so many of us. Also on our side are the thoughts, prayers, and wishes that have come from near and far.

Today we are only waiting. It remains to be seen, among other things, how her spine will accommodate to the changes her treatment brings about in her tumor. Surgery may yet be required, but otherwise, we are expecting five weeks of radiation treatment which would be given five days per week.

I, myself, have been very well taken care of and supported this week by our good friend Carlo, who flew in from PEI last week. He arrived like a true Knight. He kept me on my feet this week along with my brother, Greg, who was with us from Saturday to Tuesday. Carlos is presently on his way home leaving me quite well composed. I am grateful for the visits, enquiries, and messages from many others as well. I am very grateful to Blackberry as well! And now I hope this blog will improve communications even more, baring in mind it remains "experimental" for me. Let's see!