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The chemo curl and the curly life

That lock of hair curls again. At least it’s my own hair; it’s stubborn, just like me. The stubbornness and defiance I had, in face of the mutated, belligerent cancer cells. It refuses to lay straight. Just like me, me… the person. The person unwilling to submit to adversity and crisis. A little curled and a little twisted. Nontraditional, open to experiment.
I never followed a straight path. There was always an element of surprise, a tangent, an opportunity, a brewing rebellion. Going against the mainstream, every time. Becoming who I am , un-intimidated by cancer or the cargo in its tow.
Like this damn lock of hair, that keeps on curling.
May be I should be thankful that it is my own hair, a product of my own hair follicles, a little kinky and angled, much like the owner of the follicles. It’s not borrowed from a widowed woman in India who went to Ganges for her pilgrimage and had her head shaved. I wonder if those hair strands carry the sorrow she felt when her head was shaved off. That’s why wigs are depressing. They give you that almost complete feeling but you know in your heart that you are faking it. Just like the man-made diamonds, the lipstick on chemo morning, the smile for the chemo nurse and the sweetness of Splenda. Fake, fake, fake.
May be she was a rebel too. May be she had cancer. I would never know. Hair filaments don’t read like memoirs. Their story is confined in their shape and length. Perhaps color at times. Post Chemo hair is resistant to color. Why should anyone be surprised by that? If the DNA mutates in a cell, why can’t the keratin be defiant too? Why should it lay straight? My body is doing its own thing, independent, like riding a motor bike on the freeway in the opposite direction without a helmet. Yes, that is what cancer is, riding a motor bike on the freeway in the opposite direction without a helmet.
Its liberating, you can feel the air, the buzz, the excitement. You see life running by you, all the other suckers, following rules, while your ride is zooming in the opposite direction. The thrill of a scary ride, with the all-inclusive sinking feeling in the pit of the stomach and the dry mouth. Yes the dry mouth and the sore mouth and all in between, the known side effects of chemotherapy , and the magic mouth rinse, much like the magic of the crazy ride. No guarantees, the thrill is the sole responsibility of the owner. The disclaimer too, you may not be yourself any more on the other side of the ride. And went to make it to the other side, with windswept daze and stunned look, fatigue is waiting for you at the gate. Tired, of everything, tired, exhausted but trying.
The freeway turns a corner, and then goes down, many exits pass by. You wonder which one would be yours. Stop curling already!
May be I should turn up the heat on this flat iron. May be that would erase the obstinacy of this lock of hair. My chemo hair. The one that curls. Bald is rebellious enough, shiny and in your face bold. Warm water feels nice trickling over it. The barrier is gone. Me and my scalp in unison. Like at birth, pure and connected and the soft spots on the head , soft with a vulnerability that aging hardens. Just like the soul hardens with cancer. It gets brittle and tough, much less flexible, willing to risk snapping in half but refusing to make adjustments to life ‘s drama anymore.
What about the braid that I mailed to “Locks of Love?” My long straight hair with my keratin ? What story is weaved in that braid? Some child, perhaps a boy with leukemia is intimate with that hair now. The hair that makes him just like his neighbor boy, well almost, he is still more pale and the drawn on eye brows by his mom don’t help. But his mom is no artist and has bushy brows that she plucked but never filled in.
He looks sick and fake. That is the great tragedy of being in chemotherapy. Sick and Fake. Sick as a dog, sick as in puking your guts out -sick but fake. Penciled eyes brows, exaggerated at time, it’s all about the right amount of pressure on the eye pencil. Days when you feel weak, the eye brows are light, some days they are dark and some days nonexistent. But always fake. You can’t draw on hair. Hair is felt not drawn. It has dimensions just like cancer. Its own mind, its own path.
Life curls too, sometimes it straight, then one fine day it curls, irreversibly curly, good but curly, my own but curly, just like this damn lock of hair.

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What I have learned

What I Have Learned
February 6, 2014 · by Uzmamd · in Breast Cancer

I read a Buddhist saying last night “The teacher appears when the student is ready.” In the learning of life, I believe I was ready when the cancer arrived.

I am sure you have heard cancer survivors say that they have learned a lot through this journey. Some even go to the extent that they would do it all over again and not change a thing. I wouldn’t say that – I would jump at first opportunity for medical science to say “You are cured.” Or even, “We are sorry, it was all a big mistake.” But if it has chosen me, I accept and embrace it.

I was reflecting on if and what I have learned. First and foremost, having cancer is like having knowing how to ride a bicycle, its something you never forget….perhaps have a few moments where it escapes consciousness but it always there. Being diagnosed with a potential life threatening illness carries many lessons. Certain lessons are deep and meaningful, certain shallow and practical like – how to take off the winter hat without dislodging your wig. How to adjust your prosthesis in Target without anyone noticing. Or, how to quickly glance in the mirror for disappearing eye brows and fill them in without other gals noticing. How to look good to feel good. How to style and wash wigs. How to apply fake eyelashes. I have learned that fuzzy socks are very comforting and that spray on lotion is a useful product. I have learned that life is as wonderful with one breast as with two. And that mastectomy swim suits are not all matronly. And that a newly shaved head itches a lot.

I have learned that kind words, spoken or written have magical healing powers. That when some people speak, they are merely exercising their glossal muscles and what comes out of larynx should be ignored as sound of working machinery. That gifts do convey a lot of love and thoughtfulness and that flowers are an awesome way to brighten someone’s day. I have learned that a sugar buzz can fix melancholia on certain days (donuts for breakfast are a new discovery for me), that beautiful fragrances can be uplifting even when food doesn’t taste good. I do carry in my chemo bag, two bottles of essential oils, lemon and peppermint. Smell of fresh citrus is life reaffirming and anti nausea. Every chemo morning I wear a sweet, floral fragrance to perk me up. But because smells also evoke memory, I know that I will no longer use that perfume after tomorrow.

I have also learned that wearing a thick eyeliner hides missing eyelashes well and two strokes of blush makes a world of difference in whether you look dead or alive and that without eye brows and lashes, my eyes look pretty reptilian. I have learned that a good nurse can make a world of difference and that people generally are inclined to help if they are able to.

I have learned the friends can fill your heart with joy and sometimes strangers can convey surprising warmth. I have learned that you don’t need much in life, the key is to appreciate what you have. However, on certain days a little shopping spree doesn’t hurt. I have learned that having a positive self esteem in the best asset to have and that believing in yourself is the best belief. However, on days that you are unsure, faith can fill in blanks very effectively. I have learned that love attracts love, compassion attracts compassion, and that life has to be dealt with on a daily basis. If each day, I can say honestly to myself , I did something useful, the count of months or years doesn’t matter. Making others happy is sometimes the only way to have a good day. I have learned that one can live with fear. That it is possible to not give fear power over your life, to not give disappointment value over hope and to look at the rainbow and ignore the clouds. It is possible to ignore pain in pretty much any body part given the right state of mind. That taking medication for sleep isn’t failure of my being. I understand the phrase “Time and tide waits for none.” I have seen hope, in its most advanced and rudimentary forms. And that if there isn’t a tomorrow, there is a later.

I have wondered what “kicking cancer’s butt ” really means, and I have learned that it means holding your head high and not being afraid of death. Living every day with grace, dignity and hope. That is what makes someone kick cancer’s butt; otherwise everyone is getting mostly the same treatment and care.

I do think however that it would be quite therapeutic if the cancer center had a bean bag labeled “cancer” that patients could kick with all their might at the end of treatment. Wouldn’t that be cool?

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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?”.