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How are you doing now?

How are you doing now?

” How are you doing now?” is a question, I get asked with a fair amount of consistency. The sentence feels jagged and the “now” a bit piercing. Don’t get me wrong, I am thankful that I have well wishers who are interested in my well being but it’s a question that provokes a certain melancholic grief. It reminds me of “then” when things were particularly rough and excruciating .A treatment storm that grabbed me and swirled me around with dizzying intensity and then abruptly let go of me. My head is still spinning and my feet are still unsteady but I am out of the storm. No longer safe from the anxiety of another one that may creep up on me some day but the initial storm has passed.
The now, this. This the life after cancer.
I am quickly approaching the anniversary of the end of all major treatment towards the end of this month. I am still trying to figure out , how I am doing now?
It’s hard to not compare myself to where I was, about 2 years ago. I am considered “fresh” or “new” among the survivors who are many years out. Some are living life with Stage 4 cancer, some are quietly happy for the passage of time without major storms, some have seen more than one turmoil. We all however, live in fear. A fear that is an inevitable part of living after treatment, now.
The fear that haunts every time there is an ache or pain. It is ,but of course cancer, is what your mind says. Every back pain is cancer in the spine, never mind the pulling and lifting the day before. Every dizzying spells is metastatic disease of the brain and every bout of indigestion may the omen of cancer in the liver. Even though I am a physician, I am not immune to this post-cancer neuroticism.

At the heart of all of this, we cancer survivors, live with loss of control over our bodies. We have been subjugated by our bodies, rebellious and rogue. We despise that.
We , then, turn to things that will help us tamper that fear. Food usually becomes a bit of a preoccupation. It gives us a sense of control.” I can choose what I eat”, I can’t rid myself of the fear but I can eat the “anti-cancer diet”. Suck it up cancer! I am in charge.
There are anti inflammatory cancer diets and sugar free diets. All efforts directed towards that chance that the cancer won’t come back. In my heart I know that it’s just hopeful indulgence. Although dietary factors certainly affect the incidence of cancer but if 16 cycles of hard core chemo drugs failed to rid me of the cancer, my kale smoothie is unlikely to turn my fate.
But I do it any ways. I try to eat the 6 servings of fruits and vegetables every day. I regularly take my Tamoxifen. In entire last year there were 6 doses I somehow missed. For the rates of medication compliance in literature, its pretty darn good.
I go to yoga and walk regularly. I have lost all the extra pounds that had befriended me during the steroid fest with chemo. I try to minimize stress and sleep at least 7 hours every night. It’s all healthy but will it prevent a recurrence, I don’t know. No one can answer this question and that’s why I keep doing it, my hopeful indulgence.
Taking supplements get tricky. I worry about supplements interfering with the absorption and action of Tamoxifen I take. Eastern medicine, alternative things, acupuncture, all sounds like wonderful ways to deal with the fear head on.
When treatment ends, even though there is a great relief, there is a parallel anxiety of nothing is now being done to fight with the cancer anymore. You are on your own. To pick up and clean up after the torrid storm.
My physical energy is slowly improving. Yes post treatment progress is slow, painfully slow. Every day is a challenge to stay energetic. I work two days a week and feel quite exhausted by the evening on my work days. I hurt overall sometimes, just a low grade achi-ness. I sometimes get overcome by saddening emotions and I feel like saying ” I don’t want to live like this”, “I don’t want this monkey on my back” “I don’t want this shadow behind me every minute of every day”.
Sometimes, I wish I could be in denial. I wish I could pretend it’s all over and close the window and slam the door shut. I wish I could be sure that I have indeed survived. But with cancer, you dont have such emotional luxuries. It’s there. You live it every day. the reality of cancer.
So how am I doing now? I am managing. I appear to do be doing everything I used to just on a constricted scale. The ever present fear, is a hole in one’s emotional reservoir and there are days I feel emotionally depleted. Then, there are days when everything feels beautiful and I am thankful for being alive.
It’s an ever changing emotional landscape in the mind of a cancer survivor.
I am trying to carry on with grace what life has handed to me, one day at a time.
I continue my grieving process. I have lost the privilege of calling myself healthy, I grieve the ability to plan retirement without a little voice saying “let’s hope”, I am no longer confident that I will see my children’s high school graduations or weddings, heck, I fantasize being old and in a nursing home.
I could be “positive” as I am told to be, but these thoughts stay in mind head. The only time they will become dormant is when I am far, far away from the diagnosis date. They will never disappear but may be less audible.
So this is me , now and I think I am doing as best as I can. I am being patient, I am being thankful, I am trying to not take a day , a moment for granted, I stop and smell the roses and the coffee and my daughter’s hair. I am trying.

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Why I delayed my ovary removal surgery…….

I was quite confident of my decision. February 23rd 2015, I was scheduled to get my prophylactic oophorectomy ( surgical removal of ovaries to reduce future risk of breast cancer).Everything had been set up. Time off from work, pre-op physical and tests, extra help were all on the calendar.
I had mulled over this procedure in the last few months. I had read about it, heard about it, thought about it . The overarching paradigm: I need to do everything possible to improve my survival rate.
Right from the diagnosis, I had carefully used my medical training and knowledge to fight this dreadful disease. I had read many books, narratives and accounts. I had researched online. I had talked to my medical colleagues . As I received treatment, I was becoming more and more familiar with the disease of breast cancer, its nuances, landscape of treatment and controversies. For me, conquering the disease meant soaking up all I could find about it.
“Know thy enemy!” I said to myself.
Of course , it had its down side too. I would read about metastatic, stage 4 disease which would be scary and stressful. The disability and the vision of death would become overwhelming . But I would confront my fears and cope the best I could. I knew the survival rate of my cancer stage, Stage 3, 70 percent five year survival rate. I also understood that five year survival rate counted those women who still have the disease but remain alive even after five years of being diagnosed. I understood the grey of medical statistics.
I had been waiting for the new data to be presented at the San Antonio Breast Symposium in December 2014. That data which was supposed to be helpful in determining if there is actually increased survival advantage with ovarian suppression( suppressing their function that is).
Breast cancer and ovaries are an intimately connected topic. Breast cancers are classified according to the type of receptors that the breast cancer cells carry.
The kind of breast cancer I have is called “ER and PR positive”(ER stands for estrogen receptors, PR for progesterone receptors). This means that the cells, the cancer cells, have receptors to which female hormones, Estrogen and Progesterone will attach. Ovaries produce these hormones. Simple way to understand, the more the hormones, the more the risk that they will make the cancer cell proliferate.
Granted the assumption is that chemotherapy and radiation , after surgery, would have destroyed all the cancer cells which is what would “disease remission” be, but when it comes to a diseases like cancer, it requires every possible intervention and the end goal is always improved survival.
I had read the paper carefully, looked at the numbers and utilized my medical knowledge of statistics to come to terms with my decision. But I am not an oncologist. The subtleties of oncology is still something I don’t quite get in detail. The data from the trial hinted towards suppression of ovaries as a way of reducing that chance, slim but nonetheless a chance.
Sad truth of the life of survivor, coming to terms with odds, probability and the chance.
So I checked into the cancer center and waited to be called in for my appointment with my oncologist.. This was the first time I was meeting her since the data was presented. I was expecting this appointment to be clear and precise where she would celebrate my decision and I will go get the surgery done and move on.
The appointment didn’t go as I had expected it to.
My oncologist is a compassionate doctor. She is immensely likeable and human unlike the stereotyped detached oncologist. We talk about handbags and shopping and socks, woolen socks as she proficiently examines me every time, with sure hands and glowing confidence. She has a cheerful demeanor, and an optimistic disposition both highly desirable for a medical oncologist and she is a woman. I had read this study about how female physicians on average spend more time with their patients than male physicians do.
She is warm and engaging but never tells me what to do. Sometimes it gets annoying when it comes to sorting things that I don’t understand fully. I am not sure if she opts for this approach because I am also physician or this is her general style. Perhaps I get a nice blend of both.
She had been aware that I had scheduled the surgery. She opened the conversation by this very direct statement,” I don’t think you should do the surgery”.
I was taken aback. I muttered, ‘But didn’t the data suggest that getting the ovaries out improves survival?’ I asked.
What following was a conversation that left me befuddled and unsettled.
In my mind, getting the ovaries out was the clear way of improving survival. She however started talking about quality of life.
A lot of medical conversations, especially in the lives of those afflicted with cancer , rotate around the phrase, “quality of life”.” quality of life” that we seldom think about when we are healthy. Quality of life that becomes so relevant in terminal illness scenario. Quality of life which should be the essence and focus of all alive.
” Do you realize what abrupt menopause will do to you at your young age?”.
But I want to live long, my mind replied.
“Have you thought about the potential effects menopause on the quality of your life?”
No, I hadn’t. Once you have cancer, you get so obsessed with preserving life and staying alive that you transiently stop considering the quality of days you have.
The warrior terminology makes you want to defeat it at any cost.
Is all cost worth paying? I have already done aggressive treatments, mastectomy, harrowing cycles of chemotherapy and radiation that left my skin peeling. Isn’t that enough? In my quest for increased survival and conquering cancer, what I had left on the curbside is considering about all the things that really matter to me.
She then rattled off a list of all the things that could go wrong. “You feel well right now, you are recovering but after the surgery you can gain weight, your cardiac risk increases, you can have hot flashes, depression and other things your husband won’t be happy about”.
I have stayed fit and within normal weight all my life. The idea of acquiring pounds in exchanged for longevity didn’t seem fair. The image of myself obese with a weak heart and depression shook me up.
As she was talking, my mind was processing the phrase ” quality of life”. What do I want? More days? or more quality? Why do I have to make that choice to begin with……
Would I be fit and happy like I am now or trade in all of that for a minuscule increase in survival.
I asked her if she could give me a percentage increase in survival if I did the surgery and she said she couldn’t. So should I knowingly give up my ovaries with a great likelihood of suffering in exchange for an undetermined chance of reduction in recurrence ?
If I don’t get my ovaries out and experience a recurrence, would I blame myself for not doing everything I possibly could have? Would I feel guilty about it as I would say bye to my kids and family.
My mind was working, in all angles and in all directions.
Untimely menopause, another surgery, quality of life, cancer.
If I had the genetic mutation of BRCA 1 or 2, the decision would be easy. There is a 50% reduction in cancer risk after ovary removal in high risk women with BRCA mutation. I did not have that.
Chemotherapy shocks the ovaries, they are stunned. No one knows if they will “wake up” and start producing estrogen and progesterone that my breast cancer cells have receptors for. Or they have completely quit working for good.
Circulating levels of estrogen and progesterone will “feed” the cancer cells. My lab tests tell me I do have enough of the hormones in my body. But oncologist considers this unreliable to decide if I am in menopause or not. Never mind that I have not menstruated in the last 18 months. Still medical doctors cannot confirm if I am indeed in menopause or not.
I want to scream, I am not a lab rat, I am a person, a whole person. I question, how much do I have to give up to stay alive?. I am taking Tamoxifen , the medicine which prevents estrogen from binding to my cells. That is a lot of treatment right there. My aunt with breast cancer took that medicine for 5 years, she is here 30 years later, cancer free.
I have just started to return to some normalcy where I can get through a day without taking a nap. I have even started to flirt with the idea of regular exercise. Can I afford mentally, another disruption, another recovery, another pause? My kids are seeing me recover and be a mother again. I am reconnecting with my life.
Do I opt for that marginally increase in survival and risk a lot elsewhere? I thought and thought.
” You could do medical suppression as well, we will give you an injection every months until we are sure you are in menopause”.
The effects of suppression of ovaries with the injection would be identical to surgical removal , the only caveat, ovaries once removed cannot be put back in while I can refuse the shots should I be really miserable with the menopause symptoms.
I suddenly felt that enough is enough. I had walked in here with a date for the surgery but here I am thinking about this from an entirely different perspective.
I told the doctor. “I am taking this year off. No surgeries, no shots.”
I want to live this year recovering. I want to be strong and healthy , as much as my body will allow. I want quality of life. A year of peace and recovery. I will table this decision for next year. A year , I know, is an arbitrary time line. But it means at least one birthday, one anniversary and one birthday for each my kids and husband. It means one Christmas and new year where I am not dealing with severe direct effects of cancer treatment.
I am taking Tamoxifen and I will hope for the best. So for now , just let me live my life.
The chances that I will be happy are 100% because I feel that it’s the right decision for me for now. The other odds and statistics, I will review after a year.

(Here is the link to the post I wrote about the plan to get the ovaries out earlier http://ppg.xwc.mybluehost.me/website_445c9d4e/2014/12/17/why-i-am-planning-to-get-my-ovaries-out/)

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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.

Posted on

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.