Life is happening

It has been over a month since I was diagnosed with Metastatic Breast Cancer. It essentially means that despite having had 16 rounds of chemotherapy, a mastectomy and 33 radiations and follow up treatment with Tamoxifen and Zoladex, some of the cancer cells were able to survive in my body and took root this time in my liver.

It is still considered breast cancer and not “liver cancer”. It can also be called Stage 4 cancer of the breast or secondary breast cancer.

Stage 4 Breast cancer isn’t automatically considered a death sentence. However, it is considered incurable. Incurable sounds pretty much like ” we give up”, ” we don’t know how to make this completely go away” in lay terms. However, in reality it is not giving up.

Based on the receptor profile of the secondary cancer, it is possible to use treatments to stop or delay “progression”. There are significant number of alternatives out there that are able to accomplish this task.

The regimen I have been prescribed is a combination of Zoladex, letrezole and Ibrance. Zoladex is once a month shot given in my belly, the function of Zoladex is to stop my ovaries from making any hormones. Since Estrogen fuels the growth of my kind of breast cancer, it is detrimental that I have any estrogen in my body. Estrogen is also made in the body fat so it is best to not be over weight.

Letrezole is a drug taken by mouth and helps further cutting back on the hormone by halting the function of an enzyme.

Ibrance is considered oral chemotherapy but differs from traditional chemotherapy agents.It is a very new drug that was approved by the FDA about 1 year ago.It has shown to extend survival of pateints like me by at least a year.

Ibrance carries a risk of lowering my white cell count which means that I can get really ill should I have a low count and get some kind of infection. There fore my blood counts are monitored for such change. Ibrance is taken in “cycles”. What it essentially means is that I take it for 21 days and not take it for 7 days and then start again.

It is an amazingly costly drug and the out of pocket cost for this is about a hundred thousand dollars a year.

The toughest part of living with Stage 4 cancer is living with this shadow of death behind you every day. It is known that cancer treatments do stop working after a while and the cancer outwits the pharmacology of  drugs.

It could happen. Knowing this is the toughest part.

If that happens, we move on to another drug regimen.

Once diagnosed with metastatic illness, you are tied to the hospital and appointments. All life plans and thoughts include cancer in it. Cancer may disappear from the body at least temporarily but sits in your mind. It is like that itch that you want to ignore because you cant scratch your self “there” in front of people. The more you try to ignore, the more annoying it gets.

I am choosing to itch my self. I am choosing to see it as being there. I want to live despite.

Life is happening, here.

Yep and that annoying itch is still here.

I said to her, the one in eight

I have been sitting here thinking of coming up with something meaningful to say. All I can say is hope is living each day well, courage is being yourself when odds are stacked against you, strength is waking up and telling yourself I cando this. This, cancer, is a heavy burden to bear but look around and see the phenomenal women who are here and living to fullest and fulfilling their purpose. You will too. However long or big. You own your life with your attitude, don’t allow cancer to whisper other wise . Hugs . I am so sorry you were put on this path by life, just keep walking. The only way to go. 💕💕💕

First Day of School

A family is outside, wishing their fourth grader bye as he gets on the school bus. It’s a crisp Midwest morning, the sun is shining and everything is rich in color and drenched in sunshine. The parents look tired and a little out of sorts while the kids have their backpacks and wonder in their eyes.

The crossing guard has arrived at this spot and parents are relieved to see the same guy from last year. A cheerful and chatty man who waves at everyone with lots of heart.

There is lunch in the back pack and carrots with the ranch dip. There are random conversations about weather and school that have nothing but superficial value.

There is transition and amazement in this day today.

The first day of school.

Families are expecting a return to the routine. The pools will close soon. Activities will start. Classes will begin.

As the bus pulls over, kids line up and there is sudden commotion. Good byes and hugs ensue. As kids get on the bus, it slowly drives away.

All moms get back home to finish their coffee and get settled.

One mom sobs profoundly. She cries and she wails in pain. Her husband holds her for as long as she cries. She wants her pain to turn into tears and leave her so she can also finish her coffee and pretend that it’s alright. She is successful in doing that most of the time. But today, she couldn’t.

She is unsure how many of these days she will have.

I don’t know either.

As they say, “Make memories”. I made some more today.

And stay hopeful that there will be another first day of school for this mom.

The mighty “flu”

I have written a lot about cancer, treatments and the trauma that one has to deal with. But today I write about the Almighty “flu” … not real influenza but the routine upper respiratory infection. It’s an experience that is common to all of us and it is a miserable experience. We all know the sore throat, cold, aching sinuses and hacking cough. This may or may not be accompanied by a fever.

If cancer is the emperor of all maladies, upper respiratory infections are the queen. They make the feeling of misery very common. Everyone has experienced it at one point or the other. Queen grants much more appearances than the emperor does. I have met both.

It follows a typical pattern. You are having a good day and suddenly you just don’t feel so well. It’s hard to articulate what isn’t right but a feeling that you would love to lie down and rest. You don’t appear sick but internally feel that something is a bit off. Few hours later the throat feels like someone grabbed a sand paper and rubbed it nice. Pretty soon the eyes feel like they are a wee bit dry with a little burning feeling in them. And soon enough, all mucosal linings of the head and neck engage in a rebellion synchronized  where they are either secreting stuff or dry as heck . Gradually the burning feeling takes over and oops, there is the fever. Now the entire body is aching and you are sick. It feels like the end of the world but it’s really not and you know it but it certainly feels like there is no point carrying on. I get very depressed with colds. I find it funny that I run around with stage 4 cancer while on treatment or that I worked through my chemotherapies but a cold and 100.4 fever is what gets me miserably laid up.

And because of the cold the nasal septum hurts and feels sore. I can’t stand when the sinuses hurt. It’s a dull malicious pain in the forehead and the bones in the cheek as if your face is pressed into a hard surface. This package of misery at its peak usually lasts 1-2 days and you get surrounded by advice to drink lemon ginger tea and chicken soup. Amazingly hot liquids do help so much, so does a hot shower and a little TLC from the family.

And then you cough, a nasty hacking cough reminiscent of someone at the sanatorium. And with the cough, you feel your brain move and the sinuses that feel full get jostled and the head hurts some more.

And then slowly things get better. Albeit some of us, transition to a bacterial infection and need antibiotics.

We live in this world with many micro organisms and URIs are a gentle reminder that we share this space with others and must be respectful of those we co exist with. We are reminded the facts that size does not matter, the fact that life comes with interruptions and recovery. Its pause and go.

Pause for me. Cancer is treating me nicely for now, recent scan showed everything looked stable. But a little virus has gotten me to my knees.

But then, of course if I can get through 16 cycles of chemotherapy, I sure can get through this.

Here is to Chicken noodle soup and to friends who feel like such on hard days.

I am sorry I didn’t beat cancer

Yep, sorry, my apologies, with a diagnosis of metastasis four months ago , I didn’t beat cancer.

Every one said, “You are going to beat it”, some said, “If anyone can, you can!!”. They cheered me on as I endured one treatment after another and I kept fighting “like a girl”. I was told I will kick cancer’s ass and will show cancer who is the boss. I rode the wave of positivity and determination. I believed that I will beat it too. I thrived on the fantasy of the cancer submitting to my will and strength.

Songs, inspirational quotes, memes, greeting cards and stories, all led to me to the one end point, “beating cancer”. Being very much a type A personality, I accepted the challenge, I said to myself “I will beat cancer”. Except for one open book exam, I have hardly failed at something in life. So why not this!

However, two and a half years after my first breast cancer diagnosis, I was diagnosed with metastatic disease in the lymph nodes in my chest and some spots in my liver. Shocked and traumatized only begins to define of what I experienced. It was a very hard and exhausting process to come to acceptance.

Broken and beaten, it felt like a failure as if I let down every one who thought I would “knock the shit out of cancer”. I was no longer the example of how stage 3 can be a success story and inspiration.  As a doctor I understood that it was nothing that I did, to bring back my cancer. But I still felt a sense of shame.

Statistics indicate that 30 percent of those are diagnosed with early stage cancer will develop metastasis. I had just held on to 70 percent much more dearly. Medical science currently doesn’t know the exact mechanism through which cancer cells find home in other organs of the body.

The time had come to let go of being a “survivor” and on to a “thriver” or a “lifer”, the terms preferred by metastatic community since we ultimately end up not surviving the disease.

When I was diagnosed the first time, one of the things that helped me very much was supporting others with breast cancer. I did this so their journey could be easier and smoother through the knowledge and experience I had. I wrote blogs and participated actively in online groups.

Since the recurrence happened, I often wondered if I scared other survivors, if they looked at me and worried about getting metastatic cancer and sometime I even wondered if they actively avoided me. I, the face of incurable metastatic cancer, everything that everyone  diagnosed with breast cancer is worried about. The fear of dying of this terminal illness that has no cure. I have no cure.

Having metastatic illness is an emotionally isolating experience, and a lot of women I know tend to withdraw from others after metastasis because it is hard for others to understand our subjective experience…the experience of living life with an incurable, relentless illness with never-ending treatments. It is so overwhelming for others; they don’t want to hear much as it reactivates their own fears of mortality. I have experienced that from some of the survivor friends who want to keep the distance from me but I understand that they want to contain their anxieties of ending in my shoes. I didn’t want to horrify others.

I often wondered what people think when they look at me and if and how sorry they feel for me. I imagine something to the effect of … “Oh this poor young woman with young children who has this illness that has no cure”.

Me and my metastatic cancer.

I remembered when I was newly diagnosed, the word “metastasis” used to send chills up my spine. I used to dread my facebook feed on Mondays, which are  #metsmonday. I did not want to be reminded that my cancer could metastasize, although at stage 3 with high grade cancer cells, I knew inside that the odds of it happening are very high.

One of my stage 4 friends has lived on with bone metastasis for 11 years, she gave me hope but I still would at times try and block her out of my mind, for my own sanity, so I could worry less about me. It sounds selfish but the fear of recurrence is haunting.

I also wanted denial so bad…deny that it could happen to me. I convinced myself that I am doing everything possible to reduce the chances of my recurrence. From good diet to exercise to supplements and yoga, lowering stress and getting enough sleep and all the medications and treatments, I did all possible to lower the chance of cancer taking root within me again.

But as time went on, I also worked hard on accepting what having had cancer meant. It meant accepting life that you have no control over…Life which transitions between sweet fantasies and harsh realities. I got used to those ups and downs. I saw my friends with stage four cancers, kick each day in the butt and beat cancer on a daily basis. My denial softened gradually and I thought, “if it (metastasis )happens I will be ok” . I celebrated every clean scan and a good oncologist visit but the fear of metastasis lingered.

And then it happened. I got another, “I am so sorry “ call from my doctor and I was devastated. Besides coping with my illness, I was sad that I lost my “credibility” as a cancer warrior who had “beaten” cancer.  I was not longer a “success story”.

During all of the angst, I received this message from a fellow survivor whom I got to “know” via Facebook.

It said,

“Until I “met” you, I could not think of stage 4.

I’d panic, hyperventilate

Start to decompensate.

Then I met you.

You are showing me, with grace, passion and humor how this can be done.

You are something of a role model to me.

Doing this stage 4 before I do, if I do.

I’m not so afraid anymore. I have someone doing this ahead of me and I know how to do it.

If I ever get metastasis, I will have someone to emulate….and I will think of you the whole time.

Forgive me if this bugs you or hurts you? I just admire you so much and thank you and God for putting me in my life, but I am also so very, very sorry for your cancer.”

And then I realized I really don’t need to “beat cancer”; I have to however beat life at its game, one day at a time.

I am sorry I didn’t beat cancer but now it really doesn’t matter because I am busy kicking life and showing others how to reconcile with stage 4 breast cancer.

Dispensable Yet Hopeful

I have not written much lately. It may be a sign of my avoidance. Sometimes, writing and talking about cancer is also exhausting. Sometimes, it feels like reliving it and too much of a preoccupation. Cancer has weaved itself into my being and unwilling to abandon me much like the love and support of my friends and family.

And life is a complete package of good and the bad. I work on accepting both simultaneously as I hold on to some and let go of some.
I have been busy with the rest of my life. My family, kids and the new found freedom of not having patients to care for. I miss being a doctor very much but I also realize that being a doctor is not confined to the office. Healing is a 24/7 profession that is also incorporated in me as a person. I just don’t get paid in money for it but lots in kindness and gratitude which are the biggest gifts of all.

Recently I have been running into my patients too often on my trips to restaurants and store and wonder if it’s a sign for me to know that they are okay. We often think of ourselves as irreplaceable as people but time and time again, I have seen and experienced that we are all dispensable. I am too. Perhaps not for my kids and husband but generally, life will go on without me.

It’s a comforting thought…knowing that life will keep moving forward.

It always does. Just as those who left us after the shooting in Orlando. Heartbroken as I am, I also know that no matter how big the grief or loss is, we have no choice but to find our inner strength and keep marching and keep pace with this thing that we are trapped in, the perpetual march of life.

Tomorrows can only be better if todays are valued. With incurable cancer, today is what I have.
And today is what life offers you as well.

We all want a better future, devoid of hatred and bigotry. I do too. I may not be around to see what I plant today, to see it grow and thrive to maturity.

Not working for a better future is the loss of ultimate hope.

 Life expects all of us to be hopeful. I am too, in so many different ways.

I wish peace to all as we deal with a national tragedy.

I stand by all oppressed and distressed in this moment of grief.

But I remain hopeful. I remain grateful.

Carpe Diem or Crappy Diem

Ever since I got diagnosed with Metastatic Breast Cancer, I hear this phrase a lot, “Well no one really knows how long they have to live!” True, no one does. I don’t either. I just nod in agreement.

“You are right, no one knows.”

Sometimes, it is to be nice, sometimes to be polite.

I tell myself, “Others are trying to be supportive; they don’t really know what to say”.

In their private space, they probably worry about me knowing what everyone knows about metastatic breast cancer, the harsh fact that it kills.

They know too, very well in their hearts, having lived longer lives, having saved for retirement that the odds of me getting old and seeing my grand kids are much lower than say a woman without cancer at my age. That is the reality.

Yes, no one knows, but how many really do think of dying every day?

My typical day involves hearing about someone’s disease progressing, someone getting whole brain radiation, or someone passing on with the same illness I have. I have two choices, either pretend, that “they” were not “me”, and I will be different or realize that “this could be me” and spend each day mindfully.

I go back and forth between those two thoughts. There are days that are good and full of temporary hope and there are days that haunt me for what I may have to give up and leave.

We all live lives focused on the future. Everyone conducts themselves in a way as if they have many years ahead of them. People killing themselves with stress to make money so they have “enough” for retirement as their today slips away quickly but since they are not terminally ill, they have the luxury of dreaming of a glorious retirement. There are people who are manipulating others to their advantage, because they think they are forever. Others wasting their days because they have many years ahead. Many others that are living good lives but they don’t think of death and dying. They don’t live in the fear of recurrences every day. They don’t live in the fear of “when will my treatment stop working?”  and “when will the other shoe fall?”

If all the healthy people became preoccupied with death and dying, there will be lots of work for psychiatrists because there will be a surge of panic and anxiety disorders. Thinking about death and dying is considered morbid  by the society in those who don’t have terminal illnesses and they are regarded as “negative people”.

 The reality is that those that are healthy do not live life in full view of death and dying. They may sometimes get a moment or two where they reflect about how unpredictable life is but then they return to their bliss of not having to deal with it every day.

Those with metastasis cannot turn it off, the thoughts that it’s looming and nearby persists. It’s not about losing hope, it’s their reality, and it’s my reality.
Reality determined by odds, life expectancy and mortality rates related to the illness I have, not grabbed out of thin air.

I wish for long survival but I can’t deny what is happening in my body right now. It sleeps with me and it wakes up with me every day.

Last week, a friend of mine was urging my class mates to buy life time membership to an association, I doubt anyone else besides me did the math of whether I will break even or not if I buy the life time membership. Yearly membership is 90 dollars; life time is 500 dollars, which meant I needed to live 6 years to profit from the lifetime offer. Will I? Who knows? But in my situation, would you?

Or a month ago when a lovely makeup artist was trying to sell me eyebrow powder and said, “This will last you at least three years”, I smiled. I wondered if I will outlast the eyebrow powder.

We all live lives with focus on the future…save for retirement, get better APR because it is beneficial in the long term, buy a house- don’t rent because it saves money for the future, invest in such and such, for the future. We all take for granted thoughts of “when my kids are in college, I will such and such..”

“Someday” is a popular thought for people, “someday, I will__________________” fill your favorite thought. For me and many other, the luxury of “someday” has truly disappeared. Our someday is today.

No one, even the ones who tell me to live in the moment is truly living in the moment. That is life; you have to maintain perspective for the future. That’s how the world functions cumulatively, for a better tomorrow.

So next time, before you say to a cancer survivor, “life is not guaranteed for anyone”, do think of all the things you did that day towards preserving your future and simultaneously reflect on all the changes you aspire to make in your life based on the knowledge that your tomorrow isn’t guaranteed either?

May I dare to say, that it would be emotionally exhausting to think that in a month you might be no more, and live every day as if the day is your last day? How long can anyone without a terminal illness willingly do that?

Thinking about the end isn’t putting life on hold but reflecting to make it more meaningful. My life isn’t on hold either, its moving forward and yes,  I might outlive some of you, but people bet money in a gamble , only when the odds of winning are high, my odds are very low in this gamble, you know that and I know that.

That’s how life is played, based on odds. There are miracles, the odds of which are rare, which is precisely why they are considered miracles.

Today is my miracle. I live on, despite what is inside of me.

Everyone has two choices, Carpe diem or Crappy diem. Make it a good one!

Be fierce

Today I tell my daughter to be fierce, to be who she wants to be, to grow wings, to fly, to refuse limits that others try to put on her, be herself , not mold to what others expect but get others used to what she is capable of.
Live large my little girl.
You are a whole person and being. You weren’t born to follow, you were born to lead. You can do anything you want. Remember that!

They will tell you ” girls don’t do that” , you show them.

Let all those dont’s fuel your strength and aspirations.

Tell them your mom was her own person. She broke the ceilings and walls. Tell them you will do the same.

The world needs strong women. Ready to take on, ready to be proud of being women, ready to be fierce.

Lead the way, my girl, lead the way!

Your path may have obstacles but there is always a way around it.

Your gender is part of who you are not what you are.

Be a girl, Be a mighty girl, Be fierce!

Always!

Love, Mom

Disagreeing with others on FB

Disagreeing with others on Facebook:
1) It is Ok to disagree with someone’s opinion. However it is not OK to directly accuse them of something without understanding their position.
2) Just as your opinion is dear to you, the other person might feel exactly the same way.
3) if you have strong opinions about a topic, voice it on your wall. Be vulnerable enough to say what is on your mind rather than chasing others with your disagreement. Open your self up rather than trolling others.
4) Scrolling away is an option always.
5) Facebook community is huge, Not every post is meant to instigate you personally. You are not that important neither am I.
6) It takes all kinds to make the world.
7) I am here to connect with like minded people not looking to change you.

8) Swearing and inappropriate language reflect who you are not me.

9) There is an unfollow, unfriend and block button. They help greatly with maintaining sanity.
10) There are times, a facebook discussion will help someone understand things from a different perspective, for that you have to be kind and engaging. Relentless harassment is not the way about it.
11) Good ways to end a discussion is bringing Hitler, KKK or ISIS in it. Unless the discussion is about them.
11) There is a person behind that opinion. Try and remember that.
Love social media🙂

Good Night Son

I lay here next to him in his room, and he is cuddled right next to me. His hair smells fresh and nice, and he is telling me something that happened at school today. I am trying to focus on the contents of his story, but my mind is drifting in and out.

It has been barely three days since my diagnosis of Stage 4 metastatic cancer has been confirmed. My 9 year old boy is lying next to me in his bed, and I am staring at the fan in his room. He gets hot easily and loves to have the fan running on high at night. The chain controls have two planets hanging from them. I am sure he can tell me which ones they are along with their special features. They are spinning fast with the air, much like the thoughts in my head.

I am going in to meet the oncologist tomorrow. Tomorrow, my treatment plan will be determined. I am really hoping that I get to keep my hair, not because that is the most important thing to me, but a hairless mommy is just a bit freaky to the kids. Nothing says cancer more than a bald head. I haven’t told him yet.

He has grown up under the shadow of cancer for the last two and half years. He has seen me sick and he has seen me bald. I haven’t been able to rack up the courage to tell him that my cancer has returned. I really don’t know how to explain to him that his mother was diagnosed with an incurable illness. How do I actually destroy his innocence myself?

How do you explain to an eight year old, the concept of death and dying and incurable illness?

I wish I had let him have a pet. A fish, a hamster, something small. Something small that had died. So I could tell how he handles grief. Something insignificant in his universe that could help me answer some of my questions. The earth rotates and the planets spin. The glow in the dark planet set hangs from the curtain rod as well. Everything in nature is supposed to stay in its place to keep the balance. But what about me and him? Why must I change his orbit?

My gaze catches the telescope that sits on the chest of drawers consistent with the theme of the room. He has been obsessed with planets and the universe since he was three. An early reader, he would bring these little planet books from the library and we would read those to him over and over again. Later for the longest time his favorite book was the “Atlas of the Universe” and I would get inundated with the universe factoids that I would nod my head to as he rattled them off and followed me to the bathroom to make sure I understood.

His universe is under threat by something that was seen under the microscope four days ago. Those metastatic cells, gang banging through my body, found a new home in my liver. He could tell that something was wrong when I had my liver biopsy. The next day when he came from school, I was still in my pajamas, a very rare sight. That evening, he commented to his dad, “Mommy looks just like she used to look when she had cancer.”

My heart sank, and a psychiatrist who always knows what to say was speechless. I made lame excuses that it is because I am not in my day clothes and lied through my teeth.

The fan is whirring, and my mind continues to spin. How exactly do I sit down with him and what words should I use?

“Mommy’s cancer came back?”

“Mommy needs to start treatment again?”

“Mommy feels not so well these days?”

20 years of medical practice and dealing with complex issues, seeing death with my own eyes and discussing terminal diagnosis with patients, one would think, I would have some ability to break this to me son, but no!  All this mother is capable of his wiping her tears and hiding her face in his planets comforter.

He said to me, “Mommy I think I have figured out what www means?”

I think is the “whole wide world” or something.

I wipe my tears and say “Very close, it’s the world wide web”

He, then, cuddles some more, the whole wide world shrinks in my arms and he dozes off.

The clock keeps ticking. It’s the shape of an ipad, I found it on Zullily and was very pleased with my purchase. His chess trophies stare at me and the Legos stay still. He is gently breathing in his sleep.

His universe is under threat. I think, “Thank God he has a telescope so he can watch mommy when she becomes a star”. My eyes fill up again.

On the wall there is a decal that I thought would be good for him to look at every day,

“Today you are You, that is truer than true. There is no one alive who is Youer than You.”

Let him sleep one more night with his innocence. There is a lifetime ahead of him to learn about death and dying. I am alive today and that is truer than true.

Good night my son!

Good night stars!

Good night moon!

Good night to sons everywhere!