Merle Sprinzen Tessier has been a marketing and business strategist in New York City for more than thirty years, and began her career in market research.

Merle Tessier

 in which I explained that odds were essentially meaningless for a specific person. I argued that the outcome was either going to happen or it wasn’t, and so the personal odds were either 100 percent or 0 percent. Since you didn’t know which of those two outcomes was going to happen to you personally, the odds were essentially useless. The trick to staying hopeful is to focus on living life and getting affairs in order in case there wasn’t much of it left.

So why know the odds at all? In fact, one of the leading breast oncologists I consulted for follow-up treatment 

 refused to give me the information, saying that it would not affect my decision-making. I couldn’t disagree more strongly.

The first use of odds is to evaluate treatment options. Since almost all treatments have side effects and implications, you have the right to determine whether those consequences are worth the increased odds that treatment would provide. Not all physicians are interested in having you participate in the decision-making in that way, but without that information, you’re not 

 to participate in that way. As an example, I learned — but only with a great deal of persistence &mdash; that chemotherapy would reduce my likelihood of metastatic cancer by 2 to 3 percentage points. Given that my risk was starting at something less than 15 percent, this was simply not a significant enough risk reduction 

 to suffer through the potential side effects of chemo. While that reduction was deemed significant enough to become the standard of care, it was simply not the care I wanted, given the tradeoffs. Without knowing the odds, though, and the effect of the proposed treatment on those odds, I wouldn’t have been able to make that decision.

The second use of odds is to set a context. I know I’ve said that odds don’t matter, but I think you live differently if you know you have a 5 percent chance of survival versus a 99 percent chance. We’re human, after all. Prudence would have us living the same way in both cases — most of us never know when we’re living our last day &mdash; and so we should be equally prepared. But the reality is that we’ll face our mortality more profoundly and deeply if it seems closer. Hope, though, still springs from truly and genuinely 

 knowing which group you’re in (the 100 percent or the 0 percent), and so you hope for the outcome you want ... and prepare. And again, I think it’s our right to have the context to use in whatever way we want.

Bottom line: Odds don’t have much to do with hope. Instead, odds help with practical decision making, both about our treatment options and being prepared, come what may.

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Staying Hopeful When the Odds of Surviving Cancer Are Long: A Follow-Up

As a professional researcher living in a world of probabilities and statistics, I am used to working with odds and likelihoods. As a person, though, it is very difficult to keep all that training in mind when faced with a poor prognosis. 

Two months after my husband and I were married, he was diagnosed with small-cell lung cancer and we were told that the five-year survival rate for this type of cancer was less than five percent. How do you adjust to that kind of information? How do you keep any hope alive?

I forced myself to remember that probabilities have no meaning when you’re talking about a 

: In this case, the statistics were saying that, in general, five people out of 100, who were diagnosed with small-cell lung cancer, would be alive five years after diagnosis.

But we had absolutely no information about whether my husband was in that five percent group — research hasn’t yet determined the characteristics of those who survive. So while the chances were low that he'd be among the 5 percent, if he was then he would live and if he wasn't then he wouldn't. In other words, when you’re talking about a specific person, the odds are either 100 percent or zero percent. And we wouldn’t have any idea which group he was in until the time came.

So, we hoped that he was in the "good" group, but took all the steps needed to get our affairs in order. This wasn’t the power of positive thinking; we didn’t believe that thinking positive thoughts was going to affect his survival. Not dipping into positive thinking also meant that should my husband’s outcome not be favorable we weren’t risking feeling guilty from thinking we hadn’t done "positive" correctly or well enough. It was simply that in the face of no information, we were hoping hard for the outcome we wanted, while being practical in case that didn’t happen. 

I was also especially careful to guard against creating an expectation that he would survive — to me there is a big difference between hoping and expecting. I think having an expectation of his survival would have allowed us to become complacent, and made his death even more devastating should that have occurred &mdash; almost like going through the shock of the diagnosis all over again. By keeping our approach as "hope" rather than "expectation" we could allow ourselves to be optimistic and cheerful, rejoicing in each day and our time together, without assuming there would be a long-term future.

As luck would have it, my husband was in the five percent. He just passed the five-year mark with his cancer still in remission and was deemed cured by his oncologist. So it’s back to life — a life we don’t take for granted.

The trick is remembering that odds don't matter.

Staying Hopeful When the Odds of Surviving Cancer Are Long

“Anybody can become angry — that is easy, but to be angry with the right person and to the right degree and at the right time and for the right purpose, and in the right way &mdash; that is not within everybody's power and is not easy.” - Aristotle

Before now, I thought of anger fairly simply. It took a lot to get me mad and then I’d get over it pretty easily by fixing what was making me angry or accepting what was happening. If there was any difference in the anger I felt from time to time, the difference was intensity — more or less angry.  Maybe that was because I wasn’t an angry person.

As a result of caregiving for both my husband and aging mother — often simultaneously &mdash; I now see anger in lots of shades and textures. These new angers don’t feel simple. They don’t seem to sit on an intensity scale, they don’t even feel like the same emotion I knew as anger before, and most are not simple to overcome. And then there’s the sense with some of them that I shouldn’t even feel angry &mdash; that somehow it’s wrong, selfish, uncaring, mean or deeply inappropriate to be feeling that way.

Maybe the easiest to manage was the anger at the small cell lung cancer diagnosis my husband got two months after we were married. 

 It all seemed so unfair. While these are deeply philosophical, spiritual and existential questions, I have a very practical bent and we needed to focus on the path ahead — choose a doctor, a treatment plan and deal with the side effects.  So I cried for a few minutes, got angry for a few minutes and got to work. This was a kind of anger I understood.

Trickier was the anger that resulted from giving up so much of my time and then feeling petty for minding. At the beginning, there was so much new to do: all the decisions, research, appointments, etc. Many things that I did just for fun or for me got pushed aside in the face of the enormous number of time-critical things that had to be done for my husband and mother, who was becoming less able. Slowly, though, these feelings got a lot easier to manage as I got better at managing everything. More could fit into my schedule and the time demands of caregiving diminished as decisions were made and plans were put into action. And I sorted out my own priorities — getting very clear on those things I couldn’t give up without feeling I was losing myself and figuring out how to keep them in my life. I still have lingering thoughts about the life I once had that’s now gone (and the life I thought I was building toward), but I feel more sad than angry about that.

And speaking of feeling petty, there was the anger of not feeling appreciated for what I was doing. Maybe like everyone, I give and do without expecting a “thank you” a lot of the time. But when I was giving and doing so much, the balance got out of whack. I discovered that I work for appreciation — it makes all the difference for my continued generosity of spirit. Someone saying “thank you” like they mean it for the specific thing I’ve done (not some generalized “thank you for all you’re doing”) means that what I’ve done was noticed and received in the manner it was intended &mdash; as a gift, not an expectation, obligation or something taken for granted. I can imagine, though, how hard it must be for the person to say “thank you” all the time &mdash; it’s a constant recognition and reminder of what they are no longer able to do. Having help from paid caregivers also muddies the waters a bit since these people are paid to do what the person requests and the social rules about saying “thank you” each time are quite different. So I think it’s a matter of getting the balance right &mdash; for all of us.

With so many requests for assistance coming at me, I became especially sensitive to requests I thought the person could do for themselves — yet another different kind of anger. Sometimes it felt as if the person had simply become accustomed to asking for assistance for everything &mdash; learned helplessness. Having caregivers paid to do whatever the person wants when they want it exacerbates the issue, of course. Coming to terms with this one ultimately depended on my understanding exactly what the person’s limitations were &mdash; limitations that continually change. Just because I thought they could or should be able to do something themselves didn’t mean they were, in fact, able &mdash; much as I would hope or wish otherwise. And when they could do for themselves they needed to &mdash; asking me to be at their beck and call for everything wasn’t good for them or me or our relationship.

Saving the worst for last, the hardest anger for me to deal with results from some of the decisions that my husband and mother have made, and I’m still no expert at managing this one. It’s really tough to live with the decisions that others make if you don’t agree with them, especially if they have debilitating consequences for the person that increase the demands on you (extra work, extra limitations on your life, unpleasant new responsibilities, etc.). On the one hand, and as I’ve written before, I think it’s critical for a person to 

. On the other hand, though, it’s easy to feel victimized by instances where, in my opinion, the person’s incapacities — and therefore the demands on me &mdash; were increased by their choosing not to follow doctor’s instructions, or they chose to live with side effects rather than address them. So their decisions weren’t just 

 decisions — they were making decisions for me, too, except that I didn’t get a vote.

Here’s what I’ve figured out so far about dealing with this. First, I’ve had to work really hard to understand whether the person was actually making a decision: what seems like a decision to me could, in fact, be choice-less for them; they might not feel like they had any choice at all. I could be thinking “they won’t” when they’re thinking “I can’t.”  This is similar to the insight I had about requests: that one was about asking for help vs. doing it yourself; this one is about choosing one path or another. In both cases, I might be seeing a choice where no alternative is, in fact, possible for them.

Second, we might have completely different views about the efficacy of the option being proposed: While I might be convinced, they might think it’s worthless, and I’ve argued strongly that they’re entitled to that opinion despite how exasperated that leaves me.

Third, it’s been critical for me to get outside help (paid or otherwise) as the demands increase, especially for the most disagreeable, burdensome or thankless tasks — the ones that take the biggest toll on me or my relationships. That way I personally don’t bear the brunt of all the increased work and can still take care of myself. And it’s been key to remember that I love them, truly. 

And that brings me full circle in my thinking. I’m still not an angry person, and anger doesn’t inform every — or even most &mdash; of my interactions with my husband and mother. It has also been really important to realize that I have a choice and have made a choice: the choice to continue as the caregiver for my husband and mother and am therefore responsible for the consequences of that choice. I just didn’t expect to feel so much &mdash; and so many different kinds of &mdash; anger while I was taking care of the people I loved, and I didn’t expect the anger to be so difficult to overcome.

I expected the increased responsibilities that come from caregiving; I didn’t expect the anger in all its varieties.

Merle Tessier

Staying Hopeful When the Odds of Surviving Cancer Are Long: A Follow-Up

Staying Hopeful When the Odds of Surviving Cancer Are Long

The Anger of Caregiving

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