One of my more popular contributions to the Quora.com web site deals briefly with how we approach loss and watching a loved one die from cancer. This is a subset of one of the most important topics of my blog, the need to redefine the narrative of cancer. Stories that we hear and those we tell ourselves are very important in terms of how we approach and understand the world. For most of history, the narrative of cancer has been relayed in a fairly dreadful manner — and often rightfully so, because the story of the times was perhaps simply accurate. But the time we are living in now requires a reboot of that narrative, one with more optimism and hope and, more importantly than even that, a good, solid dose of actual science. Another thing that needs to be adjusted, I believe, is more of a societal approach to the empathy of death and dying and how that can be embraced as a natural, even welcome, component of life.
While this is a more complex issue than I can adequately address in this post, I am going to include a short answer I wrote on Quora about a year after my own diagnosis with lung cancer — at which time I had just about reached my “statistical” expectation for life expectancy with a Stage 4 diagnosis. You see, according to the abstract numbers you get through pretty much any Internet search on survival rates, Stage 4 lung cancer does not fair very well. If you believe the numbers, you’re just supposed to die. Quickly. So I did some “soul searching,” and came to terms with what dying might mean to me. Then I moved along because, for one thing, I know a little bit about reading statistics and it was clear that they did not apply to me. (My demographic, for one thing, was not properly represented, nor was the collection of treatments that had been introduced in the previous five to ten years, which is about how out of date most survival rate statistics are when you get them.) Besides, even if cancer was going to negatively impact my longevity, I still had a lot of living to do. And the plan remains to live long enough to die of something else. After all, there is no shortage of ways to exit this existence. The real question, ultimately, becomes not how or why we go, but what we do with our time here that matters.
The following post was originally written on Quora.com as a response to a question about a patient’s survival from metastatic breast cancer. I’m reposting it here because I realize that a lot of people read up on cancer blogs searching for some understanding about how to go through the process of losing someone they love to a debilitating disease.
This was the original question (grammar intact as it was written):
My mom has breast cancer and now it has spread to her bones. She is in great pain and even pain relievers doesn’t work anymore. Does she still have any chance of recovering or should I already brace myself of the possibility of losing her?
Here is my reply:
This is one of those funny things about life in general. People tend to have this notion that they need to brace for death under dire circumstances, that death itself is something that can be adequately prepared for, etc. What we really should be talking about is the quality of life as it is happening, how much we are noticing our own lives and how much we are appreciating the lives of others. No one can say with absolute certainty how or when a person is going to die of their cancer (or anything else) unless that death is imminent. Every body reacts differently to treatment, sometimes with predictable results, sometimes surprising ones. There is a huge component to will, as well; whether a patient wants to live has quite a bit to do with how well treatment will work, not because the medicine changes, but because of the commitment to the treatment and the drive to continue living life. Yesterday I was speaking with my oncologist about the "annoying" side effects that I was having, and how I was going about dealing with them and felt that, all things considered, they were certainly not worth wasting much time discussing. I told him that I felt fortunate the side effects were not worse, that for me they could be brushed aside in my daily life and mostly ignored, and how fortunate I was that the chemotherapy was easy for me to tolerate. He responded by saying that he was fairly certain it wasn't so much a difference in my response to the chemo, that the medication was not actually affecting me that much differently than anyone else, but it was my own point of view that made the difference in my response. I cannot speak to other people, but I do understand the power of narrative very well and I understand that we all define our personal "journey" through life in our own way. When we are unduly influenced by the expectations or stories of others, the result can be that a negative narrative influences our own story, guides it and defines it. Cancer is one of those subjects that is polluted by (perhaps justifiable) negativity and a history stretching thousands of years, mostly with little hope. But that is not the reality of many patients living with cancer today, possibly even most patients living with cancer today. More than ever in the history of Cancer, there is reason to be hopeful. There are many life-extending drugs that work well, adding months or years or even decades to the life-expectancy of cancer patients. There are actual cures for some cancers, and potential cures for others solidly in the works. And no one knows how a cancer will continue progressing, even if it has metastasized. Obviously, older people might have a harder time than younger ones when it comes to treatment, though an older person in good health will have an easier time than a younger person in poor health. But whatever the condition of the patient, this is the time to be designing her own narrative, to live the life she wants, to be in the here and now and to choose her own path. Caregivers have similar choices/decisions to make. We all do. I wish you well, I wish your mother well and I hope that her doctors can help mitigate any pain. But my advice for you and for everyone is to not waste a moment focusing on potential loss when there is still a life to be lived, a relationship to be savored, a moment to be experienced to the fullest.
I’ll admit to feeling a bit guilty to treating your cancer news a bit glibly – I think I first expressed shock, wished you well, then asked if we could go back to seeing pix of your kid. But as you so eloquently stated – there’s so much LIFE in the day to day. And death IS a part of life. Please do keep up your spirits and live long enough to die of something else – your writing, and friendship – is appreciated.
Treating cancer patients like everything is so dire doesn’t help anyone. I am lucky enough to have a few friends who aren’t afraid of making cancer jokes around me (nothing mean spirited, of course), and that is great because we have to be able to laugh at the absurdity of it all.
Personally, I appreciate that people check in with me to see how I am doing and how the treatment is going, but I also appreciate being treated like everybody else and having people get annoyed with me for my opinions or argue about my politics or, yeah, just want to see pics of my kid.
I might not be able to keep pace with everyone in the marathon, but I’m still in the same damn race. Sometimes it’s nice just to be seen as another sweaty runner, nothing more, nothing less.
I was diagnosed with lung cancer stage 3b in 2012 , 5 years back. The attempted surgery to remove my left lung failed because the cancer cells have already spread in both the wind pipes. So, I was asked to do chemo and radiation for at least 6 months. I didn’t do it as I couldn’t tolerate it. I only did 3 induction chemos Every 20 days in 2 months and found my tumor gone by 84%.
I took a bold step and discontinued the treatment totally. I tried to avoid the sugar and milk almost 90% and ate plenty of antioxidant vegetables and fruits and did breathing exercises and walking everyday 4 -5 km to increase the oxygen in my body.
I was normal for 2 years. Then when I decided to swim instead of walking, may be due to the chlorine I presume, my tumor grew again and I was diagnosed this time with stage 4 lung cancer. I was ruled out of surgery and radiation because the tumor has spread to both the lungs. I was advised to start the palliative care.
I insisted and got the chemotherapy started because I wanted to be alive for 4 to 5 months to handle my only daughters wedding. I did 9 chemos for 9 weeks and stopped it against the doctors advice because I lost 18 kilos of weight and 6″ around my waist and became extremely week. I didn’t want to be on a wheelchair on my daughters wedding.
This was in November 2015. My last chemo was on November 7 th 2015. I am still living and I’m almost back to normal without any medicines for the last 34 months. I walk 4 to 5 km every day and eat plenty of fruits and vegetables and cut my sugar and milk by about 75%.
Frankly I don’t know what keeps me going and what was right or wrong. I was forced to go against the doctors advice because the chemotherapy was killing me faster than the cancer. I hope my story can give some hope to stage 4 lung cancer patients. That it is not the end of life.
Your willpower and the determination to fight and a disciplined life can chase the cancer without chemo and radiation. That’s my belief.
Thank you for sharing your story. I’m sorry it took me so long to respond. I’m not certain that I follow every detail of your history, but it sounds like even though chemo was difficult to tolerate you responded to it exceptionally well. Shrinking a tumor by 84% after three treatments is quite extraordinary, after all. I’m assuming it was a combination of platinum-based chemo and one other chemo for those sessions — if you had continued on a maintenance treatment after that (without the platinum-based chemo) it would have been easier than the first three, but that doesn’t usually happen until after five or six sessions.
While eating a healthy diet and getting enough exercise (and rest) is important for supporting your body’s natural healing and all around well-being, I haven’t seen anything that could directly attribute remission to your dietary choices — what exactly did you mean by being “normal” for two years? Were you declared cancer-free by your oncologist? Or did repeated scans simply show no progression for that period? If you went two years without treatment or scans, it would have been virtually inevitable that there would be progression of disease, and I am very sorry to hear that you became stage IV. A chlorinated pool would not have caused a lung cancer to spread — all stage III lung cancers will eventually become stage IV due to natural progression. But clearly your chemotherapy following the Stage IV diagnosis also worked extremely well.
Of course, this second time you managed to do 9 rounds instead of 3 — is this because you did a very different set of drugs? This I am very curious about. I’m also curious about whether you had a DNA analysis done to check for targetable gene mutations or whether you would be a candidate for immunotherapy.
It has been almost two years since your last round of chemotherapy and you say you are “almost back to normal” — again, what does this mean? I know that within a month of being off of chemo, I felt almost back to normal, but that had nothing to do with the state of my cancer. In fact, depending on how slowly my tumors are growing, I’m sure I could have felt normal for quite some time. I eat plenty of fruit and vegetables, very little sugar, and little milk (but I do eat a fair amount of cheese sometimes), and I get a reasonable amount of exercise — these are all things that anyone can do, and they can help the body stay strong enough to deal with treatment.
I agree with you that will and determination are essential factors of successfully living with and treating cancers. I do not think that it is responsible to suggest that willpower and diet are effective replacements for proper medical care, however; I’ve seen far more incidences of people dying from the choice to avoid medical treatment than I have of people dying because of medical treatment. In your case, the chemotherapy may not have been something you could continue, but it is undeniable that chemo was highly effective for you, perhaps even more effective than for many patients. But the experience of chemotherapy is different for every patient — we all respond differently, both in terms of how effective it is and how well we deal with the side effects.
I am very sorry for you that it was not possible to tolerate the chemo more easily. But I am happy you responded as well as you did and that you were able to make some healthy lifestyle choices that enhanced your quality of life and perhaps also made a big difference in how your body responded after your treatment.
If you have a chance to provide more details on your diagnosis and treatment, I’d be very interested in hearing more. I also hope that you will look into other treatment options beyond standard chemotherapy, like the targeted drugs and immunotherapy options that are increasingly available, in case you need them in the future. Meanwhile, I hope that you enjoyed your daughter’s wedding and that you are enjoying quite a bit of time with your extended family. That is, after all, why so many of us put ourselves through difficult treatment.
All the best to you.