A Delicate Balance

It’s a delicate balance, this living with lung cancer; between life and death, between treatment and quality of life, between disease and health.

It’s been said that we begin dying as we take our first breath, and we don’t know the hour or manner of our death. There is currently no cure for lung cancer. The best I can hope for is some time with NED (No Evidence of Disease), or at least no progression in the growth of the tumors in my lungs, lymph nodes, and liver, and no further metastasis. This disease may kill me, or not. I could die from something totally unrelated to lung cancer – getting hit by a meteor for example – or I could die from complications from the disease or from the treatment itself. Life is what we make it, and death comes to us all.

Quality of life will be different for each person. For me, it means having more good days than bad. It is having fewer days suffering the side effects than not. My new regimen has given me two bad days so far. Today is not bad at all, and the first day after treatment was good, so I’m batting better than .500 at the moment. And I won’t have another treatment for 2 1/2 weeks. So it’s looking good. Each person has to decide for herself what quality of life is acceptable and for how long. If I reach the point that I have more bad days than good, then my quality of life is suffering, and it will be time to reassess treatment vs. hospice care. But until that day comes, I intend to live my life as fully as I can.

Health is something I always took for granted, in spite of my bad habits in my younger days. I think we all feel invulnerable when we are young. We don’t think about unsafe behaviors, about dying, about chronic illness, about aging. We think we will live forever, even though in some part of our brain we know we won’t. Disease is an uncomfortable fact of life for many of us as we age. We are living longer these days, so more of us are suffering illnesses like diabetes, and high blood pressure, and heart disease, and various cancers. The pressures we live under for most of our lives has an effect on our health unless we learn to decompress at an early age. I didn’t know I was under so much pressure until I started seriously looking at my life and what I wanted it to be (somewhere back in my 40s – better late than never!).

So once again onward and upward. I will try to keep this delicate balance for as long as I can.

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Death is Personal

Every time I read of someone in my extended cancer family dying, I take it personally. And it hurts whether I knew them or not. So many of them I met through the blogosphere or Facebook and have not met in person. But I still feel I know them, and we support each other in our fight for freedom. And each death reminds me of my own mortality.

I know that each person with lung cancer is different and will respond differently to different drugs. And I know what the statistics show. I try not to focus on statistics, but it’s hard not to. I instead try to focus on the survivors who have beat the odds – those who have survived 5,10 years or more – and those living with NED (No Evidence of Disease). Lung cancer isn’t curable; I know that. But I want to know why isn’t it? What is it about this disease that makes it so aggressive and so incurable?

I read scientific studies; I read clinical trial results hoping for the breakthrough treatment that will knock lung cancer on its ass. I also read stories of ‘cures’ if I will only buy whatever the supplement or diet du jour is. And I get angry at the people that are touting these ‘cures’ and giving false hope to people living with lung cancer and desperate for a cure when there isn’t one. I have to admit that every time I see a new ‘cure’, I do a search for any scientific studies on whatever ‘it’ is; most of the time there are none. But once in a while, there are promising studies, and then they don’t seem to go anywhere. And I wonder why. What happened that the research didn’t continue when the early results showed such promise. Did funding run out? Was there a catastrophe with the research itself?

There is no lack of conspiracy theories to explain why we have no cure today. Many of these theories claim there is a cure, but the Government, or the drug companies, or someone out there, has decided they want people to die, or they can’t make money from the ‘cure’, or so many other ridiculous reasons.

Lung cancer can become resistant to the chemotherapeutic agents used as first line treatment. And even to the second line treatment. The most encouraging research now seems to be targeted therapy and immunotherapy. Targeted therapy is for a specific mutation, and immunotherapy is a way to trick the body’s immune system into attacking the cancer cells, and only the cancer cells. This is different than chemo where all fast growing cells are attacked, which is why there are GI side effects, and loss of hair, etc. But even these aren’t cures, and lung cancer can develop immunity to the treatment.

So for now I will just keep going. I will have blood work and another CT scan on Tuesday and will meet with my oncologist on Wednesday. And then we’ll see where we go from here. In the meantime, I will continue living with an attitude of gratitude as much as possible.

 

On Death

I was asked the other day if being diagnosed with cancer had changed how I felt about death. And the answer is no. I do wonder what life will be like for my family and friends, but those thoughts have been with me for longer than I knew I had cancer. I can’t answer for everyone, but death is something I think about rarely. I’m comfortable with believing that death isn’t an ending but a beginning, and I know I have lots of living to do yet.  So I’m not ready to leave this world any time soon. Of course, I probably won’t have any control over when I die.

When I was first diagnosed, I was told that lung cancer isn’t curable just manageable. At that point I was certain this cancer would kill me, and I thought Stage 4 lung cancer was always fatal; the question is just when and how long I could keep it under control. I have since learned that it is possible to have no evidence of disease (NED) after treatment. And I know of some who have been NED for years. But there are also those whose treatment doesn’t work and who die early on with the disease. Part of the problem with lung cancer is it often isn’t diagnosed until the late stages when it has already metastasized. And the traditional treatments don’t always work, or they work for a little while then the cancer becomes resistant. There are some exciting new treatments out there that harness the  power of the body’s own immune system and others that target a particular DNA mutation switch – all fascinating. And options for clinical trials that may not have been available when I was diagnosed, which was just in October of last year.

I remember reading “On Death and Dying” by Elisabeth Kubler-Ross as an assigned book for one of my nursing school classes. Of course back then I had no sense of my own mortality. I saw patients die and I saw patients get well and leave the hospital. I cried with the bereaved families and rejoiced with new parents and the families of those who went home. And the five stages of grief stayed with me from all those years ago. Now I find myself going through those same stages – because those stages don’t just occur after someone dies; they can also be a response to a diagnosis such as cancer.

The five stages are denial, anger, bargaining, depression and acceptance. They do not happen in a linear fashion, so people don’t necessarily go from denial to anger then bargaining etc. The stages can occur in any order, and people can even sometimes skip a stage altogether. Some never reach acceptance. I seem to vacillate between anger and depression with a little acceptance thrown in there every once in a while. But mostly I’m fighting and convinced I can beat this, at least for a while, and determined to live my life the way I want to live it – not the life this cancer wants me to live. I never did just ‘go with the flow’; I was always the one fighting the status quo – and I still am.

Funerals

I was watching a TV show the other night where one of the characters went to a relative’s funeral and was the only one who showed up. I remember thinking how sad that was. Evidently the relative was a bitter, angry, nasty, person and had alienated the rest of the family. And that got me thinking. (Don’t you just love it when a word, a phrase, a TV episode, triggers a blog post?)

I sometimes wonder what life will be like without me in it. I know the world won’t stop. There is just so much I still want to do, so I have no intention of dying any time soon, but I’m curious about what it will be like. Will my dogs miss me (assuming I die before they do)? Will my partner find someone else? And how long will my spirit hang around? Will anyone know I’m there?

I don’t think I’m afraid of dying. I am afraid of what I’ll miss. Is that the same thing? I think I’m more curious than afraid.

Funerals are for the living to celebrate the life of the one who died. I know they can be sad occasions, but I think they should be celebrations. A time to remember. And as long as someone remembers the dead, they are not truly dead.

Until my death arrives, I think I’ll hang around and live the best life I can.

Cancer sucks

I know, that’s kinda stating the obvious. But cancer really does suck. It sucks the life out of people who have it and out of their families and friends. Those who survive the sometimes brutal treatments will never be the same; those who don’t survive have families and friends that will have a hole in their lives as long as they live.

A beautiful soul died yesterday after a long fight with cancer. There comes a time when fighting becomes too much. I never met Jane in person but knew her through an online community. She had wit, humor, and compassion and left behind a devastated husband and soulmate. Her friends speak lovingly of her, and I know she has left a hole in their hearts.

R.I.P. Lady Jane