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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.

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.

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?”.

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.

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.

Lemonheads

This friday, our family went to a Halloween Spooktacular. We go to it every year. Its always busy and crowded with little kids in costumes and stressed out adults trying to keep up with the frenzy. There are jugglers and clairvoyants and men on stilts. Its the best place little kids can be.There are pumpkins and straw bales and a haunted house. Perfect set up.

As my kids were collecting candy, my daughter handed me a packet of candy to open. It was a yellow packet with the words in blue “Lemon heads”, and suddenly I heard the chemo nurses voice, “Can I get you some juice or cracker”, “why dont you try these “lemonheads” they should help with the nausea”.

Yes, the little tart lemon shaped candy was my savior last year. However, in my mind Lemonheads will be associated with chemotherapy for the rest of my life. I suffered through incredible amout of nausea during chemotherapy. All the blessing of the part in the brain called the “chemorecepter trigger zone” being so brand spanking and unused. Being a non smoker and non drinker without any history of sleep medication use, my brain was hyperactive when it came to generating nausea. It did not let me forget that I had had chemotherapy.

The AC cycles were excruciatingly nauseous. I would typically vomit for a good half of the night and stay nauseous for about a week after it. I ate Zofran like candy but to no avail. Finally after two cycles from hell, I asked my oncologist, if something could be done differently.

She said “Why don’t we try Olanzapine?”. I stopped dead in my tracks, as a psychiatrist, I know very well what Olanzapine is. Olanzapine is an antipsychotic medication that is used to treat illnesses like Schizophrenia and Bipolar Disorder. I have prescribed it. I know all the side effects and effects. Is she talking about that Olanzapine?

I asked her again, “You mean Olanzapine (Zyprexa)?”.

She said, “Yes” “there is good data, why don’t you look it up?”

Of course, as a Doctor, she knew i would,

I read the paper myself. It was convincing , it could help.

I send my oncologist a message saying I am willing to take it. But I told her the dose I was willing to take.

I needed to maintain some control. It was humbling enough that I was just prescribed an anti-psychotic medication. The one that I prescribe to others. Tables have turned. I am the patient now. Cancer allowed me the opportunity to connect viscerally with those that I treat.

A few days ago, a patient was ranting and raving in my office, “Doc you don’t know what being on these medications is like…..”

I smiled and empathized with his frustration.

Lemonheads, olanzapine, zofran, whatever it takes, you need to fight with whatever it takes, thats what fighting cancer is. Humbling and strengthening, all in one.

A lost week

When you have had cancer in one breast, the relationship with the remaining breast is scarily ambivalent. It is part of your body but a part that you have lost trust in. It feels like it is an accessory to something sinister or it may turn to the dark side anytime.

Its credibility is pretty much ruined. Keeping it poses a fear, a fear of cancer in the other side.I have had discussions with my breast surgeon about this risk. I was reassured that the risk of cancer in the contra lateral breast in not very high. However, I have been vigilant about my right breast.

A week ago I noticed some swelling in the right breast, a small area near my right arm pit seemed suspiciously swollen.

Cold shivers through my spine and a wave of anxiety went through me. I was convinced it looked different.

Next day I saw my doctor and as expected, earned my self a mammogram and ultrasound for starters.  I have already written about the mammography technician and her ” compassion” so I will skip over that part.

The Ultrasound revealed a solid mass which was consistent with a fibroadenoma. Mass in my breast is enough to scare the day lights out of anyone but when you are still not over the betrayal of one breast a mass in the other is enough to push you over the edge.

The very familiar and haunting word, biopsy was mentioned. Yep I am a vodoo doll, stick another needle in me, such is the fate of a cancer survivor. The “lets make sure” thinking was in action.

And I got a date for a biopsy.

Four days later, iodine, alcohol, poking , prodding , squishing, bleeding, ensued. 6 samples were taken and then came the wait.

Wait for the results. The world was moving but I was frozen in time. I looked at my  hair that have grown back, I prepared my self to go get it shaved again, I remembered the violent vomiting with AC protocol, the pain post op after the mastectomy, the days of fatigue, the radiation burns.

I could possibly have to do all of it over again. I seriously asked my self, would I be able to? What is the point where a person screams they have had enough? Its not fair!

But such luxuries don’t exist in the life of a cancer survivor, you bow your head to fate and do whatever it takes to live. Giving up body parts is the cost most of us happily embrace.

We are used to losing time to these tests and investigations, a week of paralysis is part of being a cancer survivor.

The biopsy came back as benign but now the thought hurling in my brain , Is there a second mastectomy in my future?

I dodged this bullet but is the war really over?

The Cancer God is looking for another sacrifice, what will I give up now?

Toxic Pink

Toxic Pink:

The more time I spend as the recipient of health care or as a” patient”the more I realize the impact of the people that provide health care.
The value of human interaction, the importance of kind conversations, the willingness to listen and make time, the effort to make the patient feel comfortable and an equal partner in what is being done to them.
My recent interaction with a mammography technician is a great example of this. Of course this is October and a lot of women are being prompted to do mammograms, after all, that’s what most women equate it to…I need to do a mammogram so I don’t get cancer or its caught early.
The center for Breast Death as I call it is also splattered in pinkness and pinkification since it’s the fountain of pink in the hospital.
The suite is decorated with different words such as faith, hope etc. One statement that caught my eye was “hair is so overrated”, not sure which genius thought that putting this up was a good idea.
Hair is overrated? Perhaps having two breast is over rated too, you could live with one or none? Are they over rated too? Sometimes ridiculous accompanies pink.
To aggravate further, the staff was wearing neon pink t shirts. Three cheers for awareness and especially for the lady that had a fake pink lock in her hair just to make the point.
There is a difference between promoting awareness and making a show of pink. There is a thing called dignity and grace that should accompany the ” Operation Pinkify”
A lot of people don’t know how to walk this thin line. They have not seen pink closely. Some have but want to keep it light and bubbly, sort of an upbeat thing, like there is anything upbeat about cancer and yes ” hair is so overrated”. Try being bald for 6 months, may be the rating will improve.
So amidst that sea of pink, I arrive to get a mammogram for odd swelling in my right breast ( the one breast that is still alive). The waiting room is full of anxious women, as if they are being strangled by the pink ribbon. Sometimes I feel sorry for them, since they are in fear of what a mammogram might show, for me, the worst has already come true so I find my self generally more relaxed.
I get called in and am escorted by a technician whom I am not familiar with. She is shuffling though papers as she takes me in.
She looks at me and says” You had a mammogram on your right breast three months again, only one side..and now you want another one just one the right side”.
Thank you pink, thank you awareness, thank you for your decorations and t shirts and the pink bears but are you really aware what breast cancer does to a woman? That it is possible that if you remove your pink goggles and read the form I filled out that I have only one breast, thanks to breast cancer, yes that cancer that your neon pink shirt and your Pepto-Bismol colored reception area indicates?
I found myself feeling angry and sad simultaneously.
I responded, “I have only one breast, I can have only one side done”
Yay for awareness, Yay for pink.pink_ribbon5