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My message to my friends today!

Today is a very significant day , no , not because it’s Amazon deal day. It’s a very important day for me.This day propelled me into action and a new course of life. This day I got , a not so gentle reminder that life is short and that I had needed that reminder. Today exactly two years ago, the breast surgeon said, ” I am so sorry!”

Now every time , I look in the mirror I realize that life is short but it’s richness is what I still have control over. My days are now measured in quality, smiles , gratitude, good deeds and experiences. The seconds, minutes and hours matter but I have no say in the total count. So rather than obsessing about it, I will continue to make the best of what I can change and rest I will accept with gratitude. Each waking moment without pain is a gift , every day without fear is a blessing.

Two years ago, I was unaware of what resided inside of me until I had to summon all that I had , to fight the illness called Cancer. My life since then has followed this post cancer trajectory with little victories along the way but what I value most is how it has changed me for the better.

When they said don’t sweat the small stuff, I never fully grasped it because I had the option of being stressed and neurotic. After cancer, however, I try and live it every day…if I do sweat the small stuff, the stress will kill me. I understand that. I value a good night’s sleep more than a late movie or web surfing. I take care of myself. I say ” no” more often and take my emotional energy where it’s valued. I sometimes deviate but I keep trying. Friends mean so much even the ones that I have never met. Friendships are truly the essence of life. I couldn’t have gone through the last two years without friends.

I want to thank everyone for being there for me. I think there is lots of goodness in the world and that above all lessons learnt in the last 2 years, most important one is that I am one very lucky person. Life is ever changing, it’s how you appraise the change and what you make of it. And if I could, I would now break into the “Let it go ” song and start running for maximum impact????????

15 random things about me

Responding to Nancy’s point ‘s blogging challenge:

1. I lived at home till about 25 and then picked up and moved alone half way across the globe.

2. I have circled around the earth once.

3. I can burp on request.

4. I can read four languages.

5. English is not my first language.

6. I hate mathematics

7. I draw and sketch.

8. I don’t know how to swim but recently started to learn.

9. I am allergic to Adriamycin

10. I hate peeling potatoes and cutting cantaloupes

11. I cannot stand the smell of a boiled egg.

12. I dont have my gall bladder.

13. I enjoy talking to strangers and make friends easily

14. I enjoy traditional Pakistani and indian food and cook it too

15. I dont have a  middle name

Slow Down

It’s a rather typical spring day in the Midwest. The sun is out and it appears deceptively warm. It’s the kind of day that you want to step out without the much needed jacket in this part of the US. The wind however is blowing making it feel much cooler.
My kids and I want to go to the “lake”, a small made lake in our neighbor hood, for a “treasure hunt”, what an adult would call a nature walk. It’s a quiet Sunday, the neighbors are perhaps at church or having dropped of the kids at grandparents house are out at the mall.
My almost 8 and 4 year old are armed with buckets to save the “treasures’ in. It is serene and relaxing by the lake. Ducks and geese are making haphazard tangents, some novice fishermen trying their luck. Being in touch with nature feels so good.
My kids scan the shrubs and brush looking for treasures.
My son screams with excitement, and he has found a bottle cap. Nothing fancy, just a white plastic bottle cap. My daughter now gets more vigilant.
We see the remains of the “controlled burn” of the brush around the lake. Yes any uncontrolled unhampered growth is a lot of trouble, who knows more than a cancer survivor.
I hear my daughter celebrating a beautiful rock she found. At 4, everything is amazing and full of wonder. Rocks, pebbles, odd shaped stones are all treasures. Blessed is a life that sees stones as valuable and this innocence is so precious.
Before cancer, I may have spent this Sunday obsessing about what to cook, mulling over what summer camps to sign up for and organizing the house but post cancer I am out walking with my kids looking for treasures. I realize that they are learning with me to embrace nature and appreciate life. It makes me smile.
They aren’t at Kumon or at a gymnastics class or learning some craft but they are learning a skill, which we adults sign up for in retreats, letting go and relaxing, finding pleasure in everyday things that are all around us.
My daughter spots a turtle and there is sheer excitement in her voice. It’s a small turtle sitting on a branch sprouting out from the lake.
By now their buckets have an unidentifiable shiny object, a half burnt Sippy cup, a ball and something they are calling a “fishing thingy”.
A mom is pedaling with her son on their bikes. We point out the turtle to them.
She remarks ” Look (son) we are going so fast , we are missing out on all the good stuff!”
I agree. Cancer has slowed me down but the slowing down is not so bad either.

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.

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/)