Realistic Hope: Living with a Terminal Diagnosis

Realistic Hope: Living with a Terminal Diagnosis

By Anita Figueras
www.uucantonny.org

Almost nine months ago, my family doctor looked at me with a grim face and said, “I have bad news”. A week later my new doctor, an oncologist, confirmed that I have stage IV adenocarcinoma of the lung. Stage IV means a tumor that has spread, in my case to the pleural cavity that surrounds my lung. My doctors tell me that they can help me to manage this disease, but they cannot cure me.

When I look in the mirror, I don’t see someone who is terminally ill. Currently I feel pretty darn good. A surgical biopsy and genetic testing of the cancer revealed that it has a genetic mutation that makes me eligible for targeted therapy—one pill, taken first thing every morning. So far, the drug has been working. I have a reduced cancer burden, and I’m taking advantage of this period of relative peace to build strength, knowledge, and connections.

I’m also spending more time thinking about mortality—my mortality—a fact I’ve avoided for most of my life. The first time I can remember wondering how my life would play out was one night in childhood, when I lay awake worrying about dying in an accident. I decided that night that most people live average lives, and that therefore I was going to have an average life. I defined that as getting married, having kids, becoming old, and dying in my sleep. Problem solved! This comforting tale was replaced later with a story that I have good genetics. I told myself that because people in my family tend to live long lives, I would be following suit, and could therefore put off dealing with the thorny problem that life is limited in duration until a later time—to be determined, when necessary. I didn’t imagine that I would find myself here, now.

These ideas were a shield against thinking about my own death, and they did not prepare me for that morning last June. I’m not fully comfortable with my situation yet, and I do not stand before you as a paragon of strength, bravery, and acceptance. In fact, writing this sermon has been difficult and nerve-wracking. I am working on making peace with my situation, and being here right now is part of that work. I’m here to share my progress 9 months in as I figure out how to find peace, and some of the tools I’m using to be a joyful person.

I do want to share with you a few facts about lung cancer. Why I have it ultimately is a mystery, but it appears to be from a genetic mutation. The mutation I have, EGFR exon 19 deletion, is typically found in the tumors of female non-smokers with lung cancer. Most cases of lung cancer do appear to be caused by smoking, but there are many stories of young, healthy non-smokers showing up with lung cancer these days. The perception of the lung cancer community is that we are considered to have a second-class cancer, because people choose to smoke, and that therefore the disease has been shortchanged on research efforts. Here’s your quick lung cancer awareness primer, from the American Cancer Society and Janet Freeman-Daily, a lung cancer patient advocate and blogger:
The ACS estimates that in 2014, 224,000 cases of lung cancer were diagnosed in the US, and 159,000 people died from lung cancer. Lung cancer currently accounts for more deaths than any other cancer in both men and women.


It is the cause of 27% of all cancer deaths, as many as colon, breast, pancreatic & prostate cancers combined.
According to Freeman-Daily, two-thirds of lung cancer patients never smoked or quit years ago. 15%-25% are never smokers. I myself am a former smoker who quit more than 33 years ago.
Only 15% of lung cancer patients are diagnosed at an early stage, which means that 85% of lung cancer patients are, like me, diagnosed in an advanced stage of the disease. This is one sneaky disease, with few symptoms in the early, curable stages.

With those nasty facts out in the open, I want to talk first about my difficulties, the things that I must learn to accept to be at peace.

The first difficult fact for me to absorb is the survival statistics. Frankly, they are horrible. While I am happy to read about promising new treatments and clinical trials, I find it very difficult to read the median survival times. I remind myself that every patient encounters this disease as an individual case, and the statistics do not tell me what to expect. There is nothing to expect. The way forward is a mystery that will reveal itself day by day.

Waiting. There is a lot of waiting with this type of illness. Waiting to have scans, then waiting for results. Fortunately, I don’t seem to have a galloping illness, so I haven’t felt desperate while waiting, and I’ve been using the time to learn and to think through my decisions. It can be tense, though. There’s a word in the cancer community for the emotions that arise as you wait: scanxiety.

This leads to the deep, dark difficulty of my own anxiety and fear. How long will my current therapy work? How will the next line of treatment affect me? How long will I live? Am I going to be in pain?

The most painful difficulty is the effect of my illness on the people who love me. I feel helpless in the face of their pain, because this is a problem that I cannot solve for them. They have to engage in their own process of finding acceptance and peace. I think that most people who find themselves in my situation would say that it’s harder to be a witness to the pain others feel for you than it is to bear the illness itself.

I cannot completely avoid feeling sadness and fear, but I have decided not to let these negative states of being dominate my life, not to cling to them. I have decided to live my life with realistic hope, and to seek tools that help me to do so.

A dictionary definition of hope is: a feeling of expectation and a desire for a certain thing to happen. This, however, is almost the opposite of what I mean by realistic hope.

My definition of realistic hope: Living without fear of the future, with openness to new possibilities, knowledge of your ultimate goals, and a solid understanding of the probabilities.

With my definition, I’m not in denial about my diagnosis and I can seek out new information and look for treatments that might be helpful. It also includes longer term outcomes in any evaluation of treatment options. An unfortunate fact of cancer treatment is that nearly all treatments are toxic, and that the impacts of treatment on the body accumulate over time. My decisions will impact my quality of life, and I need to keep that squarely in mind as I go forward.

There are some corollaries to this definition. First of all, I need to trust my body, and pay attention to what it is telling me. When I was first diagnosed, I was very angry at my body. It had let me down, big time. However, a kind and wise friend reminded me that my body has served me well over the years and is continuing to do so. Believing this helps me take good care of myself, which improves my quality of life.

Realistic hope keeps me open to joy and to enjoyment. The good things about being alive on this beautiful planet do not diminish when you fully realize that your time to enjoy them is limited. For me and for many others, the good things become even better.

It’s important as well to allow yourself to experience the fleeting moments of pain and fear. There is a great emphasis on “staying positive” in the cancer community, and several people have told me that being positive helps cancer patients live longer. The data are very mixed, however, about optimistic attitudes resulting in increased survival time. It is not realistic to expect that you will not feel fear and sadness when you learn bad news. You are not damaging your health when those emotions arise. The trick is to not wallow, to let them pass.

My last corollary is to avoid the terminology of warfare. For me, the standard phrase of “fighting the cancer” doesn’t work. I think that managing the disease and learning to live with it are much more realistic goals. It’s very interesting, however, how difficult it is to avoid the word “fight”. This combative approach is thoroughly embedded in our language of illness. I must ask the question, however: how can you be at peace if you are fighting?

Maintaining a positive and realistic approach to the rest of my life isn’t something that is just going to happen all on its own. There is some work required, and I don’t have a strong track record of keeping healthy routines in place for long periods, so I need some help. I’m using several tools to help me take care of myself and to remain realistically hopeful, and I’d like to share them with you.

One of my most important tools is mindfulness meditation. I was part of the mindfulness meditation group that Charlie Bradt leads for many months before my diagnosis, but I did not have a practice. I have a practice now. Besides the practice, there is also access to a beautiful and complete conceptual framework. In a nutshell, we suffer not because of what happens to us, but rather because of how we respond to the world and to events in our lives. Mindfulness leads us to a new response of loving acceptance of what is—what Charlie calls “peace on demand”.

Another important tool is one that has been part of my life for more than 30 years: my knitting. One of my first painful thoughts after my diagnosis was that maybe I shouldn’t knit any big projects anymore, and that I shouldn’t knit for myself. I have since decided to just knit whatever I want to knit. There is peace and pleasure in knitting that is difficult to describe. I love the yarn, I love the motions, I love making something beautiful and useful one small stitch after another. The only thing I am avoiding is purchasing any more yarn. I have a treasure trove of beautiful stuff, and I am enjoying what I already have.

My daughter suggested another tool to me that has proven to be both fun and remarkably powerful: an online program called HabitRPG. I use it to create lists of tasks I want to do, behaviors that I commit to doing daily, and habits that I want to strengthen. I check off items as I do them, and earn gold, equipment, and pets. It sounds silly, but it is very reinforcing to see my little avatar gain skills and cool stuff. I have my list of healthy behaviors in front of me, and it’s easy to measure whether or not I am doing them because, appropriately, my avatar loses health if I don’t.

The tools that I use most to learn more about lung cancer and about new medical developments are online patient support sites. Two that I especially recommend are smartpatients.com and inspire.com. Both are places where patients and caregivers share news, their experiences with treatments, and how they manage side effects. Another excellent site is cancergrace.org, where medical professionals present information about research and treatment. I limit my time, however; just like I avoid wallowing in fear and sadness, I don’t wallow in on-line research.

The first big decision I made after diagnosis was to retire, and it was a good decision. I do not think I would feel as well as I do if I chose to work through this illness, and my heart goes out to the people who cannot retire due to age and financial situations. It takes time to take care of yourself properly, and I now have that time, along with lower stress levels. I was a workaholic who was very identified with my job, and I haven’t missed it at all. Call this tool more free time and less stress.

Another very important tool is good health insurance. I have been fortunate – so far, nothing has been denied me, and we can afford to pay for my treatments. I’m shocked at the high cost of treatment, but that is a discussion for a different time.

Another philosophical tool is realizing that I am not special or especially unlucky. We all can think of someone who became ill and died from a similar illness. Others have traveled this road before me with grace, and this is a natural part of my life. I am surprised at how comforted I feel when I remember this.

And then there is the love and support that Robert and I are both getting from family and friends. It took me by surprise how many people care. It’s up to us to keep reaching out to keep our support network strong, but we are not alone. More people will care than you ever expected, if you give them the chance.

There are some takeaways that I would like to share with you that I think could be helpful. Call this the practical tips portion of the sermon.

First, managing chronic illness can be as much about managing the effects of the medications as it is about the disease itself. Nearly everything I am dealing with right now is due to side effects from my medication, and I do not expect this reality to diminish.

Second, take care of business right away. Make a will, make a health care proxy, discuss a DNR with your doctor, and have a family meeting. The realizations that galvanized me to action on these long postponed items was that simple documents would serve my interests as well as complicated ones, and that I can trust my family not to throw away my hand knit sweaters. It’s liberating to get the paperwork done.

As much as you can, stay active and engaged doing what you enjoy doing. This sounds obvious, but people will try to baby you, and you may think that you are supposed to set limits on yourself. As one oncologist said to me, if you don’t do your best to keep living your life, why bother taking the medication?

In the end, we all have the same prognosis: we are going to live only until we die. It’s a lot easier for people without a terminal diagnosis to look past that fact. I cannot. I do believe that if I can live my life in the moment, and not be crippled by fear of the future, it doesn’t really matter whether I have two years or 20 ahead of me. Either way, I will have enjoyed a full life at the end of it.

To close, I’ll tell you about a moving thread on smartpatients.com, titled With Faith in One Hand and a Wedding Dress in the Other. A woman named Sarah Kugler Powers, who has lymphoma, wrote about finally, after ten months, deciding to pick up the dress she chose for her wedding this coming summer. She asks, “When do we allow ourselves to try to live again, not just survive, but truly live a fulfilling rich life in the aftermath of all we have experienced? It is much scarier than I imagined it would be to want more than to just survive, and to make a sincere effort to learn to move beyond treatment and try and build a life where I am living with cancer instead of under it.” An esophageal cancer patient who was told 15 years ago that he had a life expectancy of 6 months answered “When do we allow ourselves to live again? Today. Then do it again the next day.”

So may we all.

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