Quick update

Val has made contact w/ the patient rep at CancerCare. A meeting will be arranged with both docs...at least that is the plan. We'll keep you posted as things progress. Just wanted to share this news of the steps made to date.

I had an excellent visit with Anne and Colin in Edmonton, where the weather was cool but the snowbanks were far less significant than they are here in Winnipeg. It continues to be more winter than spring. Sigh. Colin is settling in well at home, and Anne is running things like clockwork. Homecare is good morning and evening. Friends continue to help out. So far, so good.

Over and out for the moment.

A Blog Post by Val: Between a Rock and a Hard Place

If I have not clearly indicated the difficulties and uncertainties surrounding cancer treatment decisions in past posts, then let me make them as clear as possible now. If I have not made it clear in past posts that uncertainty is feared and hated by humans and “dogs” our existence, then let me be clear about that now. Unfortunately, the broader existential dilemma of uncertainty, disease and dying facing us all is largely hidden to us until we encounter something like a cancer treatment decision that unmasks the dilemma.

In my previous posts, I have discussed, at least to some extent, how far we have come in cancer treatment, but I’ve tried to do this without losing sight of how far we still have to go. And we have a long way to go. As my oncologist said last week, “We don’t have a crystal ball.”  As I wrote in my post last week, a team of cancer professionals struggled to stage my tumor, and there was dissention in the ranks.

Yesterday, I saw the “dissenter”, Dr. Cooke, my radiation oncologist. After several months, two CT scans of my chest and a “conference” of oncologists, radiation is recommended. But, here is the thing: Dr. Cooke strove to make it very clear to me that I will only have “modest gains” from the radiation. When I asked if he would rank those gains on a scale of 1 to 10, he said 3. He also repeated to me three times, that my most serious risk was that of distant occurrence (lungs, liver, bones) and he stated unequivocally, “Radiation will NOT reduce that risk.” Dr. Cooke is a strong believer in “informed consent”.

In a review of radiation side effects, we discussed lymphedema. I have a 7-10% chance of it occurring. How do I compare these two sets of probabilities: my risk of lymphedema with my chance of modest gains with radiation? How does this help me make a rational, realistic decision, i.e., to give informed consent? Dr. Cooke freely admits that statistics are fine but they don’t indicate to WHOM they will apply. If, the “modest gains” were, say 7 in 10, well, that might be a slightly different story.

There are two difficult issues for me. One is the risk of lymphedema, a risk I will come back to later. The other issue is the recommendation to discontinue Herceptin after one year. Herceptin is the treatment that has the best chance to reduce my chances of a distant occurrence. So, I’m offered (local) radiation, which will not decrease this risk, and I will be taken off Herceptin, the drug designed to decrease this risk. These recommendations are based on the staging of my tumor which, to be fair to all the docs, has been difficult. Clearly Cooke does not agree with how my tumor has been staged. Dr. Cooke says I should take this issue up with Dr. Brandes. Oh, so I am to go back and forth between these two medical professionals and, in the end, figure it out myself?

Lymphedema is not particularly pleasant and I have seen many cases of it in people who have attended my yoga classes for cancer patients over the years. It is often mild but I have seen many more extreme cases. It isn’t curable and Cooke admitted that they don’t know very much about it. He mentioned what he called a “fairly reasonable study” on the effects of exercise for lymphedema and said that the study concluded that exercise had no effect one way or the other. He said that he did not think exercise had any positive or negative effects. He called another study that examined the effects of flying on lymphedema “crap”. He said that only one study on this issue has ever been conducted, it was a lousy study and, yet, lymphedema patients are cautioned about flying because of the increased risks supposedly identified in it. Hmmm… I’ll say one thing about Dr. Cooke, he is very straightforward and honest.

Did I mention that I’m left handed and that my tumor was on the left side? That is where the lymphedema would be. Are there any yoga teachers reading this who have anything to offer about practice and lymphedema?

So here I am: Having to give “informed consent” on a crucial health issue when those asking me to make the “informed consent” admit to not really knowing or having “crystal balls”. On the one hand, I think it is terribly unfair, and on the other hand, I think it is the only way the decision can be made. But, in my experience, the doctors could be more helpful. For example, I don’t understand why they, Brandes and Cooke, can’t meet with me together. Perhaps they can. Perhaps I can request such a meeting. Perhaps it is time to call on a CancerCare Patient Advocate.

In the meantime, I’m between a rock and a hard place, squarely facing the uncertainty of the results of my decisions and their impact on the quality and length of my life. 

A comment from Katy (by Amanda)

Tomorrow (Tuesday) Val will meet with Dr. Cook. Tonight, I just want to play a bit with my post on the blog. So, I am going to "leverage" and "repurpose" my sister Katy's comment, which she made in response to Val's last post about the radiation news. This leveraging is, after all, in the best of the new traditions of journalism, wherein the editors take readers' writing and fill the newspaper and website with it. No payment required. Space filled. It's all good. Well. Not really. But, certainly Katy's comment is worth reading and I have no faith that  (m)any of you go back to read the comments on past posts. I think she sums up rather well how we are both feeling about the radiation treatment that has been recommended. So. Here's Katy's comment, including photo to provide a visual reference for you: 

Blancmange

"Hmm. My reaction to your latest news is to try to find a photo of blancmange ... In English novels (as I remember them) it's a dessert presented at sick people's bedsides--or eaten in boarding schools with indifferent cooks. Please imagine a slightly unappetizing white wobbly thing on a plate instead of all these words. Unsatisfactory, supposedly good for you, vaguely disgusting, extraneous to the enjoyment of life, but you have to say Thank You for it anyway. Stage III is good, but let's decree a few more Special Celebration Dates so you can both have Amanda B'day Weeks several times a year to relieve the strain of good news. I open bids with: April 25 (1940 women got the vote in Quebec); October 24 (2005 Rosa Parks died). I WAS going to suggest the date of Morgentaler's victory but January 28 is too close to February 6. And of course I've already forgotten when Val's birthday is." [September 7]

I am off to Edmonton on Wednesday for a short week's visit with my parents. It will be good to see them. 

When I've not been shoveling snow, I've been fantasizing
about spending summer days in the gazebo at the cottage... 

...and enjoying warm sunshine on the deck that overlooks Lake Winnipeg. Oh yes! 

It ain’t over til it’s over…by Val

Yesterday at my visit with Dr. Brandes, the cancer treatment journey took a different turn from what I expected. I knew that the purpose of my meeting with him was to fill me in on the result of the Breast Disease Site Conference to which he brought my particular case for discussion. I knew that one of the issues to be discussed was whether or not it would be reasonable to stop Herceptin treatments after one year. Brandes had also said that Dr. Cook, the radiation oncologist, would have an opportunity to reassess the need for radiation.

The lead up to the Conference, as I understood it, was to recommend on treatment in view of my clear chest CT scans from November and February. In one of my posts, I had expressed surprise, tinged with some dismay, that after the November CT Scan result Brandes had said that I didn’t need radiation. The dismay came from what seemed to me to be such an abrupt shift from his former position, yet without any detail on how such a different decision could be made. I followed up by making an appointment with Dr. Cook and, sure enough, he said that he felt that radiation would give me only side effects, not substantive benefit.

So, I went to my appointment yesterday thinking that the primary topic coming out of the Conference would be the length of time I would be on Herceptin. That was certainly part of it, but the unexpected news was that they also recommended I receive radiation.

Brandes was pretty clear about how and why this recommendation came about. I had not understood the importance of the staging of my disease relative to the treatment protocol. I am quite sure that is because I was never told in a clear, straightforward manner and, also, because I just didn’t know the right questions to ask. This has led to an on-going confusion on my part since my first oncology meeting back in August.

From that initial meeting, to his credit, Brandes said that he did not really know whether I was advanced Stage III or very early Stage IV. Stage III is a local recurrence, while Stage IV is metastasized disease. He said that he thought there was a very good chance of some cancer cells circulating systemically in my body, even though nothing had shown up in my scans or blood work. The result was that he would start out treating me for Stage IV, which meant chemo, Herceptin indefinitely, radiation and anti-estrogens drugs.

But, since my first chest CT scan and blood work in November were so good, the question became could I avoid radiation and keep on only with Herceptin? When my blood work continued to be good and my second chest CT scan in February was clear, the question became should I be treated as Stage III, the protocol for which is a round of radiation, and Herceptin for one year.

The conclusion at the Conference was that I should be treated as a Stage III and, therefore, should receive radiation.

Out of the five radiation oncologists present, only one had a dissenting opinion, even though, ultimately, he said he would go along with the majority. The dissenter was Dr. Cook, my radiation oncologist. I see him next Tuesday at 11am. He is a very good communicator, so I hope my understanding of all this will continue to improve.

For better or for worse, my case illustrates how individual each case of cancer is, how many variables there are, and how treatments, in the end, are still partially based on judgment calls. Informed judgment, yes, but judgment nevertheless.

No, it ain’t over yet, and it won’t be over until it is over.

Monday meeting

Still winter here, though temperatures are beginning to moderate; we now think that minus 15 or so is warm. Sheesh!

Val has a meeting booked with Dr. Brandes on Monday afternoon, March 10. She will learn the results of the consultation between him (he?) and Dr. Cook, the radiologist. So far, she has escaped radiation. We are now on tenterhooks to learn what the latest thinking is about her treatment options.

I am heading to Edmonton in a couple of weeks for a week to visit Anne and Colin. It will be good to see them.

Tonight is my last class for my current night course. In the end, I've really enjoyed the learning - if not the time slot of this course.

Monday update by Amanda

Val: Feb. 23, 2014

Val's hair is growing back, slowly but steadily, and it seems to be red!

I have lit that fire I promised, to encourage Val to produce another post, but to no effect so far. Maybe you could nudge her?

The cats continue to go stir crazy from the persistent cold temperatures

The Olympics are over, so now we'll have to find something else to stream via our iPhones. Maybe we'll set ourselves up for Netflix...

I have only two more classes in my night course; yahoo!

Dad is home from the hospital and, not quite one week into this new reality, both he and Mum are figuring things out. Lots to learn, what with oxygen tubes, new routines and so on. My hat is off to both of them for being so positive about it all.

Off to make morning coffee and head to work. Stay in touch: The immediate crisis is over for us, but the chronic reality of ongoing treatments and energy ups and downs for both Val and me can depress us more than I might care to admit.

 Cheers to you all. Hope you have a good week yourselves....

Back in a groove by Amanda

First off: Apologies for the lengthy silence. We've been caught up in birthdays, scan results, yoga teaching, my father's state of health, and domestic stuff. But now it's the Saturday of the long weekend, so I am taking the time to check in and catch up on our news. 

Earlier this week, we learned that Val's CT (chest) and MUGA (heart) scans were both clear. That was wonderful to hear, as I had begun to think that our luck couldn't possibly hold out much longer. But it seems to be. Phew!

The previous week was consumed with multiple birthday celebrations for me, all of which were great fun: 

My colleague, Cora, put this on my office
door to mark the day. Most amusing! 

Val, Mendel and me at the dinner
at our favourite Thai restaurant. 

Randa (left) and Yvonne at the dinner at
Randa's house: delicious steaks, followed
by some of our wedding cake for
dessert! 

Yvonne, Val and Susan at the dinner
at Susan's house; David and Belle were
also there - great fun! 

Tulips from Susan - a
spring-time treat in February: Lovely! 

I highly recommend this approach to birthdays! My celebrations stretched out, literally, for an entire week and included greetings arriving in the mail, by email and phone, via text messages and Facebook. Being remembered by friends near and far felt good. Thank you all. Next week is our February birthday get-together at work, so it's not over yet for me!

In other news (as they say),  Val was crazy busy with yoga teaching the week of my birthday. Not only were all the dinner celebrations on our calendar, but Val taught a yoga class at the studio almost every day. By week's end, we were both exhausted from it all! Rather like the old days, I guess. We must re-learn how to balance what we could be doing with what we can, actually, do and still be upright at week's end. Don't get me wrong; I'm not complaining - it's so good that Val feels able to do the teaching, and she so enjoys it; but a happy medium of activity outside the house and inside the house would be ideal.

I am now on the home stretch of my Wednesday night class - only three more evenings to go - and I have worked my way into enjoying the learning. While it is a TOTAL drag to head out for a 5:30pm class on a winter's evening, I cannot deny that I am learning some interesting things about teaching, and that is good. I feel fortunate to have landed in this career at this stage of my professional life; I can bring my interest in communication into the classroom, while at the same time engage my brain with the "how" of teaching. There is so much to learn: planning effective lessons, managing the classroom dynamics, figuring out special assignments for those students who need extra help, and so on. As I said to Janet S. when I was having (my birthday) lunch with her on Monday, I really enjoy this work; it is not just a job I am doing.

I had been hoping to spend this long weekend up at the cottage, but that is not to be. Val has a yoga studio commitment, Yvonne is sick, and our car is making a noise that precludes highway driving (we must find the time to get it into the garage for a check up!). So. It's a city long weekend for me. Maybe a movie or two? Oh, and the Olympics are on, and we have discovered the wonder of Apple TV! Using the CBC Sochi app on our iPhones, we can stream that coverage onto the TV thanks to that little black box. I don't begin to understand the technology, but I certainly enjoy what it does for us.

I will also light a fire under Val to prepare another blog post; I know she's had several ideas percolating. It's "just" a matter of her having the right combination of time and energy to translate those ideas into coherent words on a page. Stay tuned.

My father, Colin, has been back on the hospital ward for a few weeks, but he has been making steady progress and, it seems, he will be going home on Tuesday (skipping the rehab ward, as there are no beds available there). Plans are in the works to ensure home care services will support Mum morning and evening, and the Tweddle clan continue to be fantastically supportive: Doug will help Mum bring Dad home. Fingers crossed it will all work out.