Tuesday, November 26, 2013

Good news: The short story

Good news from the oncologist at this afternoon's appointment: The scan results are so good, along with Val's ongoing good blood work numbers, that Dr. Brandes is taking Val off the Taxotere chemo drug and keeping her only on the Herceptin, which is much easier on the body.

Further, he's not convinced radiation is necessary. Brandes will consult with Dr. Cook, the radiologist, so that piece of news is not yet certain (as far as I am concerned), but the immediate news is excellent.

We are relieved and reveling.

The longer story will come in the next day or so, when Val puts together her next guest post and writes up all the medical details that escape me. Tomorrow she will take herself to her first Herceptin-only appointment.

Regardless of what comes at us down the road, this moment is a good one. Enjoy it with us.  xo


Monday, November 25, 2013

Not epic


My friend Miriam says that things don't have to be epic; they just need to be done. So here's a short, definitely-not-epic, post on the evening before Val sees the oncologist about what he has planned for her for the next two sessions.

Val making sushi rolls. 
It's been a long week. We are both tired: Val from the build-up of chemo fatigue - her eyes are really sore (nothing seems to provide relief though covering the eyes and lying down is better than nothing), and me from end-of-term-and-general-life-duties fatigue. Together, that makes for pretty low-key living. For example, we didn't make it to the symphony last Saturday and this Saturday Val didn't leave the house all day because it was rather cold outside. She used her energy to make sushi rolls for our supper; very labour intensive, but a very tasty change from our usual menu.
Voila! Sushi rolls for supper!

Sunday afternoon, we both toddled around the Palmerston Loop (not long) and used our energy to tidy out various drawers in our desks. Quelle excitement!

Earlier in the week, it had been exciting when Jacki got a lead on some second-hand cork flooring that she and Val decided had to make its way into our houses. Jacki picked it up and brought our share over on Tuesday late afternoon; between us three (Val included) we got it into the house (Jacki), down the stairs (me) and into three piles (Val) in the basement. Frank (our friend and handy guy whose skillful labour has transformed Clifftop Cottage and the gazebo over the last few years) will come over to install the cork onto Val's yoga floor and our office floor; we hope this will make both floors warmer - especially in the summer when the furnace doesn't come on.

This evening we finished watching the final episode of Season 4 of Doc Martin. What drama in that little Cornish village, I must say! We are really enjoying it.

I have rather stalled out on the reading front - just can't seem to find the energy to concentrate in a sustained way. Although I am persevering with Harold Fry on his pilgrimage across England. I'm sure I should have more empathy for him on his journeys - spiritual and physical - but I don't always think he deserves it. Oh well. I'll carry on with him for a while yet. Val, on the other hand, continues to read philosophy and ideas books. Her capacity for such thoughtful pursuits is remarkable, I think.

I am behind on email replies. Apologies to each of you whom I owe a response, and apologies if my response is shorter and more brusk than my usual style. Needs must, I'm afraid.

That's all for now. More tomorrow when we know more.

Tuesday, November 19, 2013

Snail mail is wonderful!

A wonderful surprise for Val arrived in snail mail on Monday: a hand-drawn card from my nephews, Max and Sam, who live in Calgary. They sent this picture of us, The Wilderness Aunties**, in a canoe: one of us is wearing a Winnipeg Jets cap, the other a Winnipeg Blue Bombers jersey. I think it must be Val in the stern, don't you? I am surely up front, receiving the orders to switch (paddling) sides on command. Meanwhile, in the background, note the bear standing on our car (a Subaru), "but don't worry," says Max, "it's a friendly bear!" Thank you, Max and Sam. It was a big treat to get a home-made piece of art in the mail. xo 
** The boys' mother, my sister-in-law, Lisa, first met us at our cottage; hence the moniker. 

Sunday, November 17, 2013

Scan and snow

Val called the oncologist's office on Friday, and the nurse read to her from the report of last Thursday's CT scan: no findings in the lungs, lymph nodes, surgical site or surrounding tissue. This seems to indicate that the treatment is having the desired effect on the site of the original tumour (removed in July). There were no notes from the oncologist, however, so we don't know what the implications of this news are in regards to the remaining two chemo sessions on Val's schedule. This will become clear, we presume, when Val sees Dr. Brandes after her next blood work appointment on Nov. 26. Til then, we are simply happy to have this information.

I continue to be amazed at how well Val is withstanding the impact of the chemotherapy. She insists on doing some domestic chores, tries to get in a gentle yoga practice and go for a walk every day. However, the treatment is not easy on her:

  • She has been experiencing low-grade nausea that makes eating a bit tricky, but it can be managed more or less successfully with prescribed pills. 
  • She is feeling neuropathy in her fingertips and feet -- highly aggravating, as it diminishes sensitivity and makes her feel a bit clumsy. 
  • She is experiencing minor annoyances with various mucous membranes (but she doesn't wish to have them or their treatments described). 
  • She describes her legs as feeling like rubber chicken; on Friday, she did not make it as far as the credit union on the edge of our neighbourhood and had to turn back home well before she wanted to. 
  • She (definitely) suffers from chemo brain, which makes a mockery of memory. (At least she has an excuse!) 
Val finds the physical symptoms (maybe especially the fatigue) and the chemo brain annoying, but the chemo brain at least brings with it the occasional humorous word misuse. She has begun to keep a list of them and may write her own post on the topic one of these days.

Saturday morning brought an unexpected delivery of flowers for Val from my colleague Nirdosh. What a thoughtful and lovely gesture at this stage of the process. The kindness just keeps coming. Also this week: Val received two separate deliveries from Amazon - Hart L. and Judi M. each sent philosophy books to expand Val's reading material; Randa and Jacki brought groceries; the Schnitzers fed us on Friday;  and Susan R. is bringing dinner tonight. Every action stitches tighter the circle of support that surrounds us. Thank you all.  

Snow came overnight and it's slippery out there, thanks to temps hovering around and just below zero. Call me nuts, but I prefer it when winter comes in cold and sharp. This namby pamby start to the season makes it dangerous on the streets and sidewalks, and I don't like it. Oh well. Our shovels are standing ready and I'll make short work later this morning of the few centimeters of snow that cover the ground.

Friday, November 15, 2013

Chronicles from Chemo-Land: Guest Post #4


Hope and Fear   

For a long time now I’ve viewed the concept of hope with suspicion. My concern with the idea of hope probably started years ago when I began studying Buddhist psychology and philosophy. Hope, defined as the combination of desire and expectation, seemed to me to be a specific kind of clinging to a view of the future or a situation that may very well turn out differently from what one desired and expected. And, whether or not one got what one hoped for, one would definitely be distracted from living effectively with the current situation.

But, we all hope for things. Hope can be a way of saying that we wish the best for people. It would be churlish of us, for example, to not wish for a reduction of suffering and adequate aid to the people in the Philippines who have recently been hit by a devastating typhoon. We hope that they get help. We hope adequate aid arrives. Unfortunately, hope is not enough. In these circumstances, our hopes are empty if we don’t contribute something to the aid effort. So, we should not conflate “hoping” with contributing, thinking that our desires and expectations are enough to impact on a situation. Some view hope as a part of the “new age”, grandiose and misguided idea that we can change things ONLY through the “power” of our thoughts. But, enough of that…

Last Thursday I had a CT scan of my chest. The purpose was to try to determine the degree of cancer activity so that a decision can be made about how many more chemo treatments I might need. The oncologist said that since my blood work was very good and if the CT Scan was good, he would like to take me off chemo after four treatments. From the beginning, he had said that I would be looking at a range of 4 to 6 treatments, but originally he didn’t give me any criteria for making the decision. Now I know at least some of the criteria.

After the CT scan last week, I found myself expecting the results to be good enough to end chemo at four treatments; and, as I became consciously aware of this hope, I also noticed feeling fear and anxiety. Actually, it is probably more accurate to say that my feeling of unease made me recognize the hope lurking in my mind. There is no question but what these kinds of tests create anxiety. But, why should I make it worse with hope? I believe that hope will always create anxiety and/or fear. Since we are always living with uncertainty, why clutter the mind with hope and fear? Needless to say, easier said than done…

Turns out, I’m not alone in my opinion. The great 17th century philosopher Baruch (Benedict) Spinoza thought that hope was a negative state of mind. He thought that hope made us passive and prompted an uncritical acceptance of and obedience to the status quo. He felt that hope and its partner, fear, confined our views and understandings to narrow situations, disabling us from being engaged with the broader picture of ourselves in society and in nature. He said that, since hope harbored anxiety, it should not be a motivator for our actions.

Spinoza believed that to be active in the world in a positive way required that we call upon our innate desire to motivate ourselves to become self-aware, reflective and capable of critical thought. In the words of the Buddha, to “see things as they are”. Only then will we become effective moral agents capable of identifying our place in the larger community and world and capable of acting for its survival and betterment. Spinoza’s moral psychology was based on the conviction that reason and emotion, mind and body, humankind and nature were interdependent and inseparable. Hope only undermined being active in the world.

Which brings me to the thoughtful comment Katy (Amanda’s sister) made on my last post. If you click on the comment button you will see what she wrote. She amusingly exhorts me to not wind up on a mountaintop in some state of meditative bliss and I think she is exactly right when she says: “Amanda won’t like it!” But, as I understand it, the goal of self-reflection, contemplation or meditation isn’t to isolate oneself from the world and its problems; rather it is to become more part of the world and its problems. Indeed, it is common these days to hear the term “Engaged Buddhism”, which highlights the necessity of contributing to the broader community. I think the Buddha and Spinoza would have had some great conversations and I wouldn’t even be surprised if Marx would have thoroughly enjoyed their company too!

As I sit here this morning challenging my mind to think clearly and coherently, I am also looking out at a beautiful fall day full of sunshine, bright colours, shapes and reflections. I am amazed that I am here at all, that there is so much love in my life and I feel pretty good. So, I figure I can just abandon hope and go for a walk. But just in the neighborhood—not up the mountain.

Tuesday, November 12, 2013

A banner day

Came home to clean windows (thank you EAVESCLEANEDplus), fresh & delicious muffins made by Susan R., and a hand-written letter from Ben S. in Ottawa.

Val enjoyed supper of a modified (non-tomato-y) pasta dish that settled ok despite the come-and-go nausea she is experiencing.

And Chester is settling nicely into his new front-porch condo.

All in all, a good day's end.

xo


Monday, November 11, 2013

Cats and flowers

Love comes in all shapes and forms
So. Val's guest post on Saturday and my sister's (Katy) comment in reply have brought me to this post today: Life goes on at our house, regardless of anything else. It's really all about the cats and small acts of connection. 

Holly loves her new tube in which she can hide and can chase imaginary mice and real barn-yarns filled with catnip; and Chester appreciates the lavish condo Val has constructed for him on the front porch. He seems to have given up on the equally lavish condo she built for him in the garage last winter. Maybe an intruder has ruined it for  him. 

Thanks to...
  • Deborah S. for the beautiful amaryllis that is blooming into beauty day by day
  • Each of you who has sent an email to stay in touch
  • Each of you who has sent a snail mail letter or card - it's always exciting to get 'real' mail at the end of the work day
  • Yvonne and Randa for bringing dinners
  • Jacki, Mo and Yvonne for bringing us groceries   
  • My family - Anne, Colin, Katy, Charles and Lisa - who sent a big fat cheque as our Fine Food Fund, out of which we are to buy ready-to-eat meals
  • This list is not exhaustive: Many of you have dropped by with muffins and soup and other fine offerings; thanks to each of you
On the food front, we seem to have more or less sorted ourselves out. More meat on the menu than usual and more repeats of tried-and-true options. So far so good. If you have a serving of something you'd like to offer us, I would welcome it! Just email me with details, so I can plan it into the week's kitchen schedule.  

We are enjoying the Doc Martin TV series lent to us by Barb/Dick and Deborah/Mendel. The Cornish countryside is exquisite (though can you imagine living there with single-pane windows and all that wind and sea-salt spray???) and the characters amusing in their daily lives. 

My teaching is moving into end-of-term rhythms, which means the students are getting really focused on final assignments and prepping for exams. While this translates eventually into mounds of marking for me, it also means slightly less onerous workloads for me at the moment during the week. Phew! 

I have upped my exercise quotient by walking to and from bus stops farther away our house, and that time moving my body allows my mind to sort itself out and settle into and out of the day. Feels good. 

Eventually, I got a great long list of book suggestions from you - thank you! However, I  have discovered that I am not up for anything terribly erudite or complex: A good story well told that pulls me along through it without a great effort on my part to put things together is what I'm after. Jeffrey Archer worked for me (The Fourth Estate), but I'm not sure I can take a whole bunch more of him and his characters - although the story of the newspaper empires was entertaining on my bus rides. I may yet fall back on my children's books of ponies and schools and nurses; they truly require no effort on my part! 

The cold has arrived here over the weekend: wind chill into the minus 20s. Good grief. But no snow yet. Although I'm sure that will come, too. 

That's all for now. I'll share the results of the CT scan that Val had on Thursday once we get them from her oncologist. In the mean time, just carry on, day by day. 

Love,
Amanda 

Saturday, November 9, 2013

Walking with...


Chronicles from Chemo-Land
Guest Post No. 3 by Val

I realized the other day with astounding clarity that I have a chronic, potentially deadly disease. And, I only say “potentially” because of modern medicine’s possible capacity to keep this cancer at bay long enough to allow something else to kick me off first. I have had this disease for 17 years so it has been chronic, although the nicer term is “in remission”, for a long time. But now its chronic nature is starkly revealed to me by the type of interventions that are required to keep it at bay: not just chemotherapy and radiation, which are short term, but monthly IV infusions of herceptin indefinitely, and a 5-year plan for Letrazole.

I have a friend who talks about “walking with cancer”. I think that this is one way in which she expresses this realization; i.e., the chronic, deadly nature of cancer. I have been thinking about it as “walking with death”. For me, expressing it this way takes some of the mystique and horror of cancer out of the equation and focuses directly on the reality that we are all going to die. It reflects aspects of Buddhist teachings; for example, experience the sensations of our breathing while contemplating the fact that each breath brings us closer to our last.

The purpose, of course, is to shake us up into realizing how precious life is and to act accordingly by living ethically and authentically. Authentically in the sense that we accept who we are with all that means--the good, the bad, the ups, the downs, successes and failures--and having the courage to take risks and to pick ourselves up when we fail and try again. To make us ask ourselves what is meaningful in our lives and how to pursue that meaning. We talk about this freely—living authentically, blah, blah—but actually doing it is a different matter. It is damn difficult.

I listened to a Buddhist teacher, Stephen Batchelor, give a talk in which he spoke eloquently about how we must “ground ourselves” in our bodies in order to make any headway at all with this project of living authentically in the face of death. What he meant was to start with our sensory experience, our direct experience of living in a body because that experience is inherently, automatically calming. I know this to be true. But despite years of yoga practice, I find I still need reminding.

The treatment protocols and their side effects for this chronic disease will be good reminders. I already know that getting through each treatment, each test and figuring out how to handle symptoms have been greatly aided by just lying over a bolster, feeling the bodily sensations shift and change while watching my breath. 

I do not say that the anxiety of cancer and its treatments can or should be tackled only by breathing and reflection, though. Lorazepam has its place and I’m sure glad I have a prescription for drugs, and a method for working with my body – yoga. 

Wednesday, November 6, 2013

Session No. 4 report

Chemo session 4 completed this afternoon. Val tired but ok. Blood work numbers continue to impress the oncologist. Tomorrow's scan should tell a more detailed story of the body's state.

Yvonne came by with pizza (Amy's organic) for dinner, which we dressed up nicely with extra veg and cheese. The pre-dinner drink didn't hurt, I must say.

I will stay home with Val til Ann-Marie D. comes by late morning to take her to the scan. It's good that I have this flexibility with my work.

Will keep you updated.

Still no snow here.

Tuesday, November 5, 2013

Chemo session No. 4 this week

Big week here: Blood work and a visit with the oncologist today, then chemo session no. 4 tomorrow and a CT scan on Thursday. Once through all this, Val will be over the mid-way mark in the 6-session regime prescribed. Phew.

Fatigue has settled in, though Val is still reading philosophy, going for daily walks and doing some household chores.

The rhythm of our life these days seems normal. I suppose that's the good news, although it is also unsettling that such a regime can be normalized. We live in a peculiar world, I must say.

No snow here yet. If you have it in your neck of the woods, please keep it there! ha ha

I'll report on Val's state once she's through these next few days.