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Best Death, Best Way to Go

“So death from cancer is the best, the closest to the death that Buñuel wanted and had. You can say goodbye, reflect on your life, leave last messages, perhaps visit special places for the last time, listen to favorite pieces of music, read loved poems, and prepare, according to your beliefs, to meet your maker or enjoy eternal oblivion.”……Richard Smith ( BMJ blog). Just like many other survivors, I am also distraught after reading Richard Smith’s blog titled “Dying with cancer as the best death.”

I understand that this is his opinion and he has a choice to express his thoughts. What is wrong is drawing a conclusion about a disease process based on one or two stories that he quotes, sidelining the slow painful deaths that are caused by cancer and the agony of those who love the ones with cancer and seeing them suffer.

When I was young, I also thought that slow death is better than sudden death. I also thought that having the time to say goodbyes and to do some of the things from the bucket list would be great. Now that I am in my forties, with two young children, a husband, numerous friends, and patients, I don’t know if I can take a position on my death and how it should be and as a matter of fact anyone’s death.

Death and dying is a very personal experience. Knowing viscerally that you will die after the diagnosis of cancer is the hardest part of accepting cancer. The word “cancer” feels like an engine to which death cars are always attached. Life with cancer means living in full view of possible death. Thinking about it, worrying about it, accepting it. Death with cancer means prolonged suffering. The psychological distress that occurs after cancer diagnosis is relentless. Dark thoughts are always around. Physical pain and stupor of death approaching are gruesome, slowly but surely.

Knowing that you have cancer and that too the kind that will kill you in a few months, is not all about reading love poems and traveling. It’s about trying hard to find hope every day to get through from morning to evening despite the heavy weight on the chest. It isn’t just about going to Eiffel tower for one last trip, it is also endless appointments and sad encounters.

Dr. Smith cautions, “Stay away from overambitious oncologists, and let’s stop wasting billions trying to cure cancer, potentially leaving us to die a much more horrible death.”

Most of the time death is horrible. Yes, there is something to be said about letting go gracefully of life when death seems inevitable, but living to ripe old age is the way of nature for the majority. That is how we are designed to think.

Letting go, for someone in their 80s, whatever the cause of death might be, is different than letting go, for someone in their 30s after dealing and fighting with cancer.
He seems to have no clue about so many that live with the pain of metastatic illness, knowing that death is on its way, but the wait is excruciating.

Love, morphine, and whiskey is his recommended path to the bliss of cancer death.
I wish it were a trick that would work for all. It’s hard for a dying person to continue to love life and allow others to love him or her knowing very well that their grief is impending. Many disengage emotionally in the face of impending death. Not all medications mix with alcohol and not everyone tolerates morphine.

It is a shame that he, a doctor, thinks that he can decide what a “good kind ” of death is. We, physicians, at the most get a small window into the pain of prolonged death. We write orders, comfort the patient and move on. We know only when explained, what the intensity of bone pain is like. We can only measure pain and disability on a scale that is subjective for each patient.

Pain is also very personal, just like death. Having had cancer, pain scares me more than death. Prolonged painful death with cancer metastasis in the bones or other organs. A state in which pain would make me want to accept the other alternative — death.

Dr. Smith’s take on cancer death is highly irresponsible. Maybe for an old person in their 70s, with tons of money and resources and no human attachments, death with cancer may be fairly romantic. That it would come with increased vigor to live the life that is left, find inspiration and meaning, read love poems, and say prolonged goodbyes.

As a mother of two children, 4 and 7, I am unsure how prolonged my goodbye should be. Ideally for it will last a lifetime. My children make me want to wake up every morning and fight cancer with all my might. Yes, I have more inspiration to live life and am more accepting of my life circumstances but dying from cancer is not my fantasy, neither do I feel this privilege having been bestowed upon me as a possibility.

I accept death as an inevitable consequence of being born but at the same time I don’t have an opinion on exactly how I want it. Neither should anyone try and convince another about what is the best way to die.

Cancer has been called a blessing and gift by many that find meaning after their diagnosis and now cancer-death is the best death. Well, I am apparently in such good position for this kind of death, according to Dr. Richard Smith. Thank you for your insight, your flowers should be arriving shortly.

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The Cancer Card?

If life is a deck of cards, in my deck I received a card, that is called the “Cancer Card”. A recent post in New York Times enlightened me on the power of the “Cancer Card”. Apparently it is the ticket to freedom, to withdraw from responsibilities and to do pretty much whatever you want.

I am thinking, why didn’t any one tell me this ?.

I would be happy to give it away, but I don’t see anyone wanting it.

I have kept the card, just like all the others, as a reminder of how precious every moment of life is. It turns out as the author claims, it is something that you can flash to get your way.

I guess anything in the world is open to manipulation. Religion is, authority is , why not cancer?

Cancer survivors symbolizes mortality to those who are free of cancer, they remind them that death is inevitable and because of that perhaps lives touched by cancer are given special privileges.Sometimes for sympathy, sometime in empathy but mostly because people are kind.

I will say I have been on the receiving side of much kindness and love. More so after cancer, those who value me as a person.

I see my share of manipulation in the practice of medicine, sometimes for pain pills , sometimes for disability, sometimes for the heck of it. I have seen it all. However underneath all of it, is the desire to be validated, accepted and acknowledged.

If only we can provide that to each other, without others needing to extract that from us, perhaps most will not manipulate.

Life ,eventually, is about accepting what you are given, turning it into what validates you, moving forward with a keen concern about others that are walking along you.

This holiday season, lets tolerate each other, validate each other and own what we need to do and fulfill our duties and eat some cookies. Happy Holidays to you all!

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Why I am planning to get my ovaries out….

The Cancer gods are at it again. This time, they want the sacrifice of the ovaries. I am ready to give up some more.

Here is why….

My breast cancer had been categorized as “ER PR positive”. This means that the cancer cells when assessed revealed that they have receptors for Estrogen and Progesterone, the female hormones. This is generally good news because it is normal for breast cells to have those receptors. It also means that the cancer cells are not severely mutated and different from the original cell that they evolved from. These are therefore considered less aggressive tumors than the ones that are called “Triple Negative ” cancers. The term triple negative means that they lack three kind of receptors the cancer cells were evaluated for. Women with triple negative cancers don’t have any “pill” treatment option for them.Their treatment is surgery, chemotherapy and radiation.

The three kind of receptors are the Estrogen and Progesterone receptors and HER-2 receptors. Why is this important to know?

It is because the cells have mutated so much that they don’t look much like the cell they started out as. The silver lining of triple negative cancers is that they respond very well to chemotherapy and many a times when the patient takes chemotherapy before surgery, the tumor actually disappears from the image of mammogram or MRI.

Some patients are ER PR negative (they don’t have those receptors) but HER-2 positive. This used to be bad news until the advent of a drug by the name of Herceptin that actually improves the survival rate to the point that it is similar to those without the HER-2 receptor.

So there are so many variations and differences from one patient to another with breast cancer just on the basis of cell’s receptor status, never mind that stage and pathology.

Being a physician, what I clearly understand is that female hormones are bad for me. They will feed any lingering cancer cell in my body and stimulate its growth. So ideally my body should be free of female hormones.

I am on a medicine called Tamoxifen which is standard treatment for women who have not had menopause and have had ER PR positive breast cancer. The job of Tamoxifen is to find Estrogen receptors in the body and stop estrogen from acting on them.

The result is menopause like symptoms. Not very fun in early 40s. In winter when I am bundled up in a down coat and multiple winter accessories and driving, I could have a “summer attack” that could compel me to pull over and literally strip in my car. I have stopped wearing warmer sweaters since I might get a hot flash and then will have a hard time cooling down. I cannot wear a warmer shirt to bed or I will wake up without it have taken it off due to the heat in the middle of the night. So my thermoregulation is very temperamental. This is expected. I didn’t expect it at my age, but then oh well I didn’t expect a brush with death at my age either.

Being a young woman, it is unclear whether I am in menopause or not. Here is why…Chemotherapies are very harsh treatments, so harsh that they literally stun the ovaries and they freeze. The ovaries literally go “What the hell happened!” and most women will stop having menstrual cycles shortly after first or second chemotherapy. Very young women will likely have return of their periods after a year or so of chemotherapy.

My last period was Sept, 2013. Age wise I sit on the cusp of young and not so young woman. My mom was in her 50s when she had her menopause. So as of today, no doctor can tell me whether I am in menopause or not.

So are the scary female hormones, the ones that are supposed to feed the cancer still running around in my body? May be? Is the Tamoxifen helping, perhaps, it has good data supporting increased survival.

So the question arises, how can I be sure that the “evil” female hormones are completely gone? Yes, that’s correct, get the freaking ovaries out. This means an additional surgery.

Then, why didn’t I do it as soon as I was diagnosed with this cancer?

In the medical world, recommendations for elective or prophylactic surgeries are usually based on data. Doctors love data, they love studies, information that will help them predict odds of success of a certain intervention.Surgery is intervention and therefore must be justified.

I was waiting for December. Every December there is a national Breast Cancer Symposium in San Antonio where cutting edge research is presented. One of the studies that was scheduled to be present was the “SOFT” trail ( Suppression of ovaries Function Trail ). This would be the data that would convince me that I need to get my ovaries removed.

The results presented showed improved in survival for women who had ovarian suppression ( either by getting them removed surgically or taking shots that will suppress the working of the ovaries) and took a medicine exemestane ( reserved only for women who are in menopause for sure) had better survival that those that didn’t have ovarian suppression and took tamoxifen, that would be someone like me.

I want to live. I want to do as much as I can to reduce any chances of a recurrence. I also know that I have no control. The roulette is spinning. Anything that will improve survival, I will do.

Such is a life touched by cancer, you sign up willingly for surgeries, medications full of dastardly side effects, just to seek reassurance that nothing actually will provide but the quest continues.

I am waiting for a call to schedule, yet another surgery.

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I hope……..

Today a patient of mine is sitting on the wall, the wall the divides the cancer and the non-cancer world.
An abnormal lab result has put him there. He is in the middle, waiting for his fate, the outcome of further investigations, to determine which side he is going to fall on. He is dizzy with stress of not knowing and , I , his doctor can tell which side he is going fall on but I don’t want to accept it.
I know that angst, I know it much too well. I feel it in the pit of my stomach, I breathe it with every “survivor” breath , I connect to it every time I have a weird ache or pain.
I don’t want him to join me in the cancer world. We don’t need another companion. There are too many of us on this side already.13.7 million of us. These transitions need to stop.
Sitting in front of me is someone who has just been given a through-looking glass and he sees a life with cancer that could be his. A window has been opened for him to look at what a life of worry and facing death is like. He looks grim and sad, his shoulders are hunched with the burden.
I am distressed. It’s not fair. But my gut tells me, he is yet another victim of the unfairness that we call “life”.
The cancer world is ready to embrace another recruit.

There is muttering on the cancer side, the knowing nods and the sighs.
An unceremonious welcome awaits him. We can comfort him but never take the worry away.
We have to own our mortality every day. Denial doesn’t live in the cancer world. Its across the wall where we once lived. We left it behind when we fell on this side just as we lost our worry free existence.
Someone that has been handed a worry rolled up in a bundle of ,” We need to do additional testing to determine why its abnormal?”, laced by a lame comment of “It’s going to be OK”.

I know that dishonesty too well. The pat on the shoulder, that comforting look, that supportive comment that is trying to mask the true anxiety of the doctor who already knows that her patient has already been given the passport of the cancer world. I am guilty of that too.
It’s my job as a doctor to shelter my patients from unnecessary worries of false positives and to believe in the best until the biopsy glares in my face and I see the word “malignant”. Till then, my job is to give hope and comfort but quietly brace for the worst, assess in my mind what investigations will be needed, what kind of support will be needed for the patient, how will this patient cope with the diagnosis and so on.

He is sitting in front of me as my heart sinks a little. I remember my time on the wall. The heavy weight of every passing moment and the distressing apprehension. The ebb and flow of hope and tears that spread on that wall. The first introduction to the reality of death and dying casting its shadow on me.

I fell on the cancer side. I hope my dear patient you don’t. I know what it does. I hope you fall back on the other side that has bliss. I hope so, I really hope so.

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What would you change if you got cancer?

This last year has been of major emotional and physical transformations, of small defeats and big victories, of failure and resilience and illness and quest of health.
It’s hard to even remember what my life was like before this shadow called “cancer” started to follow me around. I can vow that it was good and intact even though at that time, I had my share of “issues” and “anxieties”.
My perspective ,of course, was out of whack. I used to be affected by smaller issues and trapped in anxieties that aren’t worth anyone’s time. I was living life on autopilot with clear denial of death and illness like an average 40 year old woman with a family and kids. The issues that occupied my mind included how to add more veggies to my kids’ diet, how to reduce screen time and how to keep the house more orderly and neat. The other concerns included trivial stuff like hair days, what I don’t have to wear and what to serve for dinner. In summary, my life was pretty good. But if you had had asked the “pre-cancer” me, I would have rattled off a list of what was wrong with my life.
Being a physician, I had work related anxieties too, stress of patient care , documentation, changing health care environment etc too.
If someone would have suggested to me, why don’t you take 6 months to a year off to focus on your health, I would have thought it to be entirely absurd, thinking who ever does that? I ended up doing exactly that, a year off for gruesome treatments.
I had a list, a list of mundane day to day things that I felt obligated to do.
I stressed over minor things, got irritated at things that weren’t worth my while. How do I know they were minor? Because I got cancer.
When cancer starts to follow you around, other issues certainly get very minute. It’s a giant that makes other ailments of mind and soul look like viral cold ,for it force you to assess that most avoided, most anxiety provoking chapter of the book of life, “death and dying”.
You look at your material accumulations and think” Is this really worth my time and money?”. You look at your to-do list and say “Is this really what used to stress me out? Did I really complain about a sore throat taking me down for 3 days?”.
Cancer completely reorganizes that schema in the head. It never too far away, silently following you where ever you go. Its whisper always echoes in the head.
Everything becomes tainted with the shades of cancer. Sometimes the tint is brightening, as it highlights the value of true joy. Of feeling life as it comes, of living it rather than getting through it. It helps focus on the blessing ,most often taken for granted, one’s health.
People do ask me about what I have really learned in the last year, what I want to say is….you can learn it too if you honestly answer this question, “What will I change in my life if I got cancer tomorrow?”.

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Fear Or Love

A dear friend of mine recently read a piece I wrote that ran in New York Times under “Faces of Breast Cancer.” He asked me, “My question is …where is the fear?”

I replied, “Because love conquers fear”.

I believe in that statement with all my heart. That is how I have lived my life. I just didn’t understand it as well as I do now. Love always conquers fear.

As a psychiatrist, I listen to stories steeped in fear and anxiety. Sometimes entire life spans spent in avoiding the fear and lives embroiled in the anxiety of change and acceptance.

Anxiety is cruel and visceral. It lives under the skin, from tip of the finger to end of the hair, in every pore, in every cell. Once it takes over, it is so hard to limit it. Its like a raging forest fire, you can only contain it and it takes forever to extinguish. And lots of damage follows.

Dreams usually burn first in the fire of anxiety. Dreams need one to be fearless, to take on the world and the pain that is required to see them through. Self esteem is the second this that is reduced to ash in anxiety. Lack of faith in one’s self is so toxic to the psyche. It takes away from the contentment of the soul, bit by bit, till one is merely a shell of who they are.

When I was told I had cancer, I was afraid too. Just like anyone else would be. Why not? When you are handed uncertainly for lifetime in a concrete word called “cancer,” it evokes fear and lots of it. However, the antidote of fear is love.

I saw cancer, I loved myself more. I trusted my self. I saw my needs. I reassessed priorities.

Change causes anxiety. We all make excuses to not change the status quo. Its predictable and certain, we know to a certain extent how to deal with it. Unknown is scary but not taking the chance closes the world of possibilities forever.

I took the chance and said, “I am afraid, but I love more than I fear.” I opened my heart and made the uncertainty certain. The love for myself, for others, gave me the courage and strength that I needed.

Its a choice, a daily choice that requires practice. Choose love over fear and let the magic unfold.

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Trick or Treat…both

Today is Halloween, the annual homage to refined sugar in the US. As a cancer survivor, I can’t tell you how many times I have been told this, “Cancer needs sugar to live”. There is a subtle hint there for me, that I need to get off of sugar. Sugar and cancer is such a controversial topic. There are people who are absolutely sure that sugar causes cancer and then those who think its a joke.

I wholeheartedly agree that going off sugar is a great idea and the downfall of American diet is refined sugar. But I do not for one second believe, that giving up refined sugar or sugar in general offers survival advantage in the case of cancer. It certainly will help with weight loss, energy level and a sense of well being but the idea the sugar is fueling exclusively cancer cell mitosis and mutation is not scientific. Certainly calories from carbohydrates fuel cell growth but that is true for all cells, cancer or not. Cancer cells are more efficient in utilizing these resources.But limiting sugar intake is a great idea.

Most of the time I feel such thinking is trying to exert control over a life situation that it too big to contain, too uncertain, too anxiety provoking.

I got cancer, I was powerless over it, I couldn’t stop it from happening. I have done treatment and I hope its over for good. I can feel good by doing things that I believe will keep it away, like adopt a healthy life style, eat right , exercise, follow my oncologist’s advice, etc., but at the same time I need to maintain my sanity and not get all neurotic about trying to control the outcomes. Recurrences do happen despite best efforts. That’s part of being a survivor.

Today  I do intend to sneak a Twix here and there and I want you to know that if you are a survivor and afflicted with love of sugar, please don’t be scared. If going off of sugar was the answer, no  treated diabetic would ever develop cancer and all untreated ones would.

Take care of yourself, an occasional treat doesn’t hurt and life has tricked us enough.