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My Mommy Has Cancer

I am six years old and my mommy has cancer. One day she started to go to many doctor appointments. Then she cut her hair short. I think she is sick but getting better now. She goes to chemotherapy. May be it hurts, she says it doesn’t. She shared her numbing lotion with me and it helps her not feel the pain. She looks like a man now, she has no hair. Sometimes she wears a wig, she then looks pretty. When I was going to Montessori she used to drive me there. She doesn’t drive me places now, mostly daddy does. She sometimes doesn’t let me have a play date because she says the house is messy, I don’t know why the house is messy. I wake up around 7, before when I woke up she used to be in the kitchen but now she wakes up later than all of us. She goes to hospital every week now. She has only one breast, before she had two. She has told me that the other one will grow back in summer like her hair. I see some hair on her head. May be she is right. Sometimes she cries, then daddy hugs her. Sometimes she yells at me when I wake her up from her nap but then gives me a hug and tells me its OK. She lets me play on the iPad more than before. I get to watch more movies than before. I read in a book that Steve Jobs died of cancer but mommy says he didn’t go for treatment. Mommy goes for treatment. I don’t think she is dying, she doesn’t look like she is dying. She and I will run a race this summer, she likes to run but doesn’t run now, it is really cold outside. Daddy and I and my sister went to see “Frozen”, she didn’t go. She has marks on her and a round thing in her chest.

Sometimes I feel sad, I want my old mommy back, the one that has hair just like my friend’s mom. But they will grow back. I can see it. She sometimes comes to the school bus stop and when she does , we talk about a lot of stuff. But then the crossing guard starts to talk to her, I don’t like that. I like when I come back from school and she is waiting for me. She doesn’t come there all the time. It is cold outside. We don’t go to really busy places these days because daddy says she can get infection. I had an infection last year, it didn’t feel good.

I love my mommy.She always knows when I am tired and when she says that, I end up yawning. Then I get angry and say,”I am not tired”. I like when she gives me “tubbies”. I like it when she helps me with my homework and I love the chicken she makes. Daddy cooks but mostly vegetables, I like chicken better. I like sleeping next to her when she will let me but sometimes when she is really tired , she doesn’t let me.She came to my Halloween party at school, I told my friend she was wearing a wig. She was mad at me for doing that. But friends share secrets.

I love my mommy…a lot.

The hardest thing about being a parent with cancer is not knowing what your kids are thinking. Every thing you do, everything that you go through affects them now and later. How can I not appreciate this as a mother and as a psychiatrist. I try to imagine what he thinks, I try to imagine what he might feel. I don’t know, so I just have to keep trying, to get better and better and keeping loving him, in his reality as he is imagining it.

Survival

As the end of chemotherapy is drawing near, I am thinking more about the next phase of my life, the post treatment phase. I ask myself what kind of survivor will I be? They say you are never the same after cancer… Will I be? Will I be wrapped in Kale and soaked in Almond Milk? Will I be neurotic about every ache and pain that emerges and worry about “it” being back? Will I be able to resume life where I left off?

At this point ,I am  still figuring out the semantics of having cancer. I have cancer, I have had cancer, or I had cancer. At what point do you become a survivor? See I have bought a charm and some other inscribed items that say “survivor” but I am not sure when I am allowed to wear them. I know I am a fighter – have always been. I am empowered, will always be. But when do I have the privilege to say, I have survived? I have survived being told “You have cancer.” I have survived a mastectomy. And chemotherapy. I have endured.

Are you a survivor when you are done with treatments? Are you a survivor when the first post treatment scan is clean? My personal conclusion, surviving the news “You have cancer” earns you the status. Scary three words these are. Even scarier than ” You are dead!”  That phone call, the tone of the “Hello” in the doctor’s voice, the pause, the anxiety, the nervousness and the hesitation in the conversation, and the sadness,”You have Cancer”……the disbelief, the shock, the flashback of your entire life in a moment….”But I have a life to live, I have kids, I have a home, I have a career!”Those are the things I have, not Cancer. Who wants to “have” cancer! Well like it or not, I have it and I guess get to keep it until I am told I don’t have it anymore, or its in “remission”. The three words that are now scarier than “you have cancer” to me are recurrence, metastasis and palliation.

Perhaps being a survivor means being able to live past those scary thoughts. Past the fear of being told that you may get the signal to pack up and go any time. Past the thoughts that you may or may not live to be old. I have to admit, I now fantasize about getting demented, for that would mean I would have lived a long life. Just to clarify, the psychiatrist in me wants you to know, there are dementias that happen in early years but I ain’t rooting for those. Turning fully grey used to be a fantasy. Now thanks to chemo, the regrowth is all grey. How much life is enough anyways? Long enough for you children to grow old, get settled, have kids? At what point, does one say, I have lived long enough? Survived long enough?

Perhaps being a survivor means having had a chance to think about those questions and have your answer ready, being aware of the value of life , perhaps being a survivor means living life mindfully, having survived the ignorance of spending days without thought, having survived the lack of appreciation of being healthy everyday, having survived not knowing what fighting for your life means.

It’s a journey of discovery. I hope I am a mindful survivor. Ready to resume life. Ready to survive the next curve-ball life throws at me while holding on to that other ball called  “I had cancer.”

Once Chemo is done……

The phrase “Once chemo is done” is being used a lot in my home these days. For the last five months of my life, and hence the life of my family has been revolving around the chemotherapy. All plans, invitations, outings, birthdays, celebrations took the back seat and the chemo schedule dominated the calendar. It was the only point of reference in our lives. We have existed as a “cancer family” – y way of describing a family when one family member has the disease but all members suffer equally). I couldn’t commit to anything knowing very well that a significant unpredictability ruled my schedule. (I have continued to work one day a week on Thursday, my best day of the week , the only day I predictably feel well). Even those who wanted to come and visit have been subject to “I don’t know how well I will feel that day, why don’t you check the day of and we can decide.” As if they are also living day to day.

Halloween came two days after chemo, thanksgiving a day before, Christmas a day before, some other holidays the day of…….chemo has been the ultimate truth of our lives and household. The much anticipated end of chemotherapy comes in about 4 weeks.

One of my friends had said to me in a text “There is nothing routine about the chemo routine.” But somehow my entire family has settled in the chemo routine to the point that my son thought (until last week) that we (my husband and I) went on a date every Friday morning. Of course he doesn’t need to know that we do end up having a lunch date every Friday after chemo. Friday evenings are quiet and Disney movies baby sit kids and bedtime is early. Weekends revolve mostly around keeping up with the household so it continues to look like its inhabited by humans. My husband running around like a chicken with his head cut off. By Sunday evening though, the house does look like a bomb has exploded here which is filled with toys, paper, sofa cushions and stuff. I would still be in the same spot on the couch as I was when I came home from chemo – except for sleeping in the bed at night.

Children have gotten used to the idea of mommy taking naps. Our 3 yr old saw her dad nap once in the last few weeks and said, “Daddy is sick, he needs medicine”. Medicine and treatment is something she seems quite  familiar with now. I caught our 7 yr old humming “Tis the season to end chemo la la la la la la…”

It has been the ultimate reference in our lives. Now, we are moving close to the end. The routine will be new, the definition of time will be new as well. The value of time would be new too.

I will be person and a half after chemo, having grown horizontally and emotionally. I was pretty trim at the time of the diagnosis to the point that I let myself be weighed in doctor’s offices with shoes on. Then came the surgery and I got skinnier.That was about 22 pounds ago! Chemotherapy started and so did the steroids. Every time I checked in, the weight was a pound and pound and half up. 12 treatments and voila! My oncologist insists that it’s water retention. I am willing to buy her story, except these cheeks aren’t filled with water! I am so glad I have held on to some of my maternity clothes. I had heard that chemotherapy isn’t easy, but I still didn’t know how hard it truly is. The persistent unwell feeling crushes the spirit to the point of loosing hope. But some how I managed, we managed.

So, It is truly hard to imagine what it would be like….The only thing I know for sure is that I am going to cry. When ever I think of the last time that they will stick the needle in the port, the last time I would have to smell that particular note of rubbing alcohol at the cancer center, last time the fake smile I put on as the needle enters my chest with bothersome pressure, last time I would have to get in the chemo bed/chair, last time I would be attached to an infusion pump for a few hours, last time I would be aroused from the Ativan and Benadryl stupor to confirm my name and DOB, last time I will come home not feeling well…….my chest and my eyes fill up. It will soon be over!

Ending chemotherapy will be an intense emotional experience that perhaps only another chemo recipient can relate to. The “personal hell” that it puts you through is an experience that only you truly understand, the aching in the middle of the night that is only yours. What it feels like to be woken up with retching, proceeding to vomit and then go back to sleep only to be woken up again to repeat the same isn’t something that can be explained to another. What it means to have leg cramps even though you are lying in a bed under warm blankets is hard to articulate. How the lack of energy impacts you when your toddler wants you to go from one room to another but you cant…only your heart can feel. What it means to be still while your life is passing by for 5 long months….

Time has come to be defined in my life as before cancer, after cancer, after surgery, before chemo, after chemo, before radiation, after radiation. It is hard to relate to concept of “some day” any more or ” in the future “or “one day”. It has become more about here and now. Its about making plans that are solid and near. There isn’t room for vague anymore. I have been handed the warning, a check engine light…….its no more driving mindlessly thinking may be I will take the next exit or stop at the nearest rest spot. This road requires clarity and faith. Clarity of where this is going and faith that I will get there. It really doesn’t matter who is driving in the next lane or what car they are driving. Its about being aware of the moment and value it and not loosing its sight for some other moment that may never really happen. Cheers to the here and now!!

Mommy and Me

My daughter watching Diego,”Baby chinchilla needs her mommy!”

My daughter looking at baby carrots. ” Baby carrots need their mommy!”

My daughter looking at me, “Are you OK mommy? does the aoo-wa hurt?”

Me looking at my daughter, “You are going to be OK, you have your mommy”

She turns 3 in a few days. I have to keep fighting.

Open Letter to The Rogue Cancer Cells

Dear Cancer,

Believe me, you aren’t dear to me but I am just sticking to literary convention. You have enjoyed the stay in my body, my temple for much too long and have overstayed your welcome. I would like you to pack your stuff (wanted to say another word that also starts with “s”) and leave. My body has better things to do than to fight with your megalomania. There is an exit sign that you are ignoring.

There is a lot that this body needs to accomplish to ever turn itself over to you.You have lodged yourself in a place where I need room to accommodate the love and caring that life has to offer. I need the room vacated so it can be filled with joy and peace and contentment.

I need my energy to so that I can live to see my children grow. My son needs you to leave so he can grow up to be a man but still have a place where his tears are not seen as weakness and his laughter infuses life. My daughter needs you to leave so she is assured that she can be taught all the “girly” things that she needs to learn in life and be all that she needs to be.

I need you to leave so I can grow old with my loving husband. He needs you to leave so he can have his life back. He needs you to go so he doesn’t have to be the mother and father. He needs you to leave so he can lose the anxiety of losing the love of his life.

I think you have been trying to suck the energy out of my existence for far to too long – bit by bit, and piece by piece. You don’t scare me and I can look at your sick crazily mitotic nuclei in the eye and say, “I am not afraid’. I just need to you to leave.

I want you to leave so my friends can rejoice, and my family can breathe freely. I need you to leave so that my patients can rest assured that the one person they feel that truly understands them is still there and they won’t have to start over. They need to heal. I need to heal.

I want you to leave so I can look at those who abandoned me during cancer and say, “Thank you for helping me realize that you never mattered. I won this battle without you!”

I need you to leave, for I have learned all the lessons that I needed to learn after looking at death in the eye. I have learned not to take anything, or anyone for granted. I have learned to take each moment as it comes. To find meaning and hope in every day life. To make things happen and not wait. To be myself and trust myself. To be honest and forthright. To endure.

I have learned the meaning of pain and suffering, that a peaceful night’s sleep is a blessing, being able to digest food is a treat, to be pain-free is a miracle, to feel energetic is a gift, to feel beautiful is an internal feeling and to appreciate life is hard work.

I am ready to move on from the lessons I have learned so I would like you to move on. Leave me alone. And the next chemo, when the Taxol infusion is flowing through my blood, I would like it to find you and tell you so.

It’s time to move on. It’s time to heal. It’s time to recover. It’s time to start over.

Yours(not really!!),

A cancer survivor

Just Brows-ing

I used to consider my self a bit of an artist till I had to face the dilemma of drawing eyebrows on my face. Its a cliche but cancer does make you appreciate a lot that you take for granted. Eyebrows are a good example. I have always appreciated nice eyebrows on others but never paid a lot of attention to my own. Fortunately, I didn’t have the bushy ones that require grooming or the uni-brow or any other variant that require regular upkeep. They were light, nicely shaped and just right.

Cut to chemotherapy, and a faint line of abandoned stubborn hair hangs out on the supra-orbital ridge. Never realized until lately, the contrast the brows brought to the picture. Being a regular to TV shopping channels, I thought when the make artists said, brows frame the face, I doubted their intentions. But I think they are right. So after much research online, I went and bought an eyebrow pencil. How hard could it be to draw two eyebrows? Obviously, I had no idea.

The key challenge of course is – they have to match! It’s easy to fill gaps but creating brows out of nothing at all is tough. Can you imagine seeing a psychiatrist who has an eyebrow perpetually raised. Hmm, yes, I realize now, ill-positioned eye brows can cost me my practice. “Doc, I was so hurt by my mom’s comment.” Then imagine the poor patient staring at raised brow, creating all sorts of self esteem issues from the empathic failure of the therapist. Brows too high, I seem amused by every story, a little too low and I appear more depressed than the patient. Press the pencil too hard, and I look ready for my juggling act.

Most folks with cancer rant about their scalp hair and I have too but I am learning that the little insignificant nose hair are a blessing too. Yes, you lose those too with chemotherapy and that leads to an ongoing love affair with the nasal saline. Sniffling and cleaning the congested nose and a not so occasional nose bleed. Never did I appreciate the functional aspect of the lashes, yes they are there for a purpose too not just to fund the cosmetic industry. But you got to adapt, every step of the way. Allow nature to take its course of redesigning your face all over again.

Accept it and keep moving. These are minor inconveniences for the promise of a cancer free life is the prize. Worth it? Totally! Additional bonus – finding yourself and your strength along the way. Sometimes just hiding the weakness is strength. It’s hard to stay focused on the goal when your body is protesting with fatigue and the end still seems far away. There are still days of exhaustion, itchy palms, episodes of diarrhea, pain all over the body, aching bones and joints between you and the end of chemo. You weave in and out of life, 3 days to rest and recover, 3 days to live and then back to chemotherapy. Trying to keep the fabric of your life intact. Being hands-on with kids on good days and then letting it go for the days you can’t. Sometimes browsing, sometimes more invested. Zooming in and out of the window of your life, hoping to stay there.

It’s a bumpy ride. All other goals are secondary. The first one is really the one that matters…to stay alive and fight. For in a fight, the strength isn’t measured by anything but the belief that you will. I will.

Memories of the Mammaries

Some days the most significant accomplishment of the day for me is flip through a Victoria’s Secret Catalog and not drop a tear. One of the downsides of having a mastectomy is the feeling of being excluded from something that you were a part of for a long time. I used to circle the lingerie section at stores just to check out what is there, but now I feel like I don’t belong there. That my wishes are tied now to matronly specialty stores offers crowded by ladies my mom’s age.

Nothing against them, but as they say chemo ages a person 10 years. Sometimes I feel like I am living the life of a 50-year-old. The hot flashes confirm the suspicion. I  had never thought the I will have hot flashes at 41. Suddenly, a bunch of 50 year-olds and I are chums because we can both bitch about hot flashes and night sweats.

Losing a breast isn’t easy, I always feel like taking a right turn (don’t have the left boob) because I feel that is the direction my body wants to go, as if the right turn signal is on! My run doesn’t have the same rhythm, the plop-plop plop-plop is just plop…plop. Every time I look in the mirror, my chest winks at me. I do thank the surgeon for leaving a small part in the middle intact so could pull together a deceiving cleavage, if I dare to bare it. Another advantage of having both breasts is, it hides the little protuberant belly. Now with the breast gone, I get a better view of the steroid-enhanced roundness and believe me, I don’t want to see that.  Steroids make me hungry, and after chemo there is only so much salad and cucumber a gal can eat before you open the cookie box. It’s not me, it’s the steroids!

I remember the night before the surgery. I had showered so I would sleep better. Gauri was laying in my lap, and then she fell asleep, cozily nuzzled between the two soft and friendly entities. And there she was breathing softly with her face burrowed in my chest, and I knew that this was the last time she had this comfort. But I knew that I needed to do the surgery, so she still has a mom to hug and cuddle with.

I remember when Shuja was born. I wanted to breastfeed him right away. What I didn’t know was how newborns root for the nipple. I panicked, thought my baby was blind and couldn’t really see where to latch on. Thank God it was just fear. I breastfed both my children for at least one year. Those are some of the beautiful memories of the mammaries, and the love and bond they created between my children and me. I feel the loss, and I think they do too, in their way as if one of their favorite childhood comfort toys got broken.

The great thing about children is their resilience. They don’t obsess over stuff for too long. Not like adults. Something we can all learn from the little ones in our homes.

A Balancing Act

Who knows being off balance than a mono-boob but that  is what keeps me mindful of my balance, physical and mental. Having cancer has been a reminder of the importance concept of “balance” in my life. Well, being a psychiatrist and all, its something that I don’t think has ever been far from me but certainly cancer has reinforced its importance some more. Balance, between work and play, between love and distance, between self and other, between healthy and unhealthy. Every day presents with so many choices, from do I take a nap or spend time helping my son solve a crossword puzzle, or watch Dora with my little girl, do I eat what I like or choose what is more nutritious? Do I think about the 30% women who don’t make it to 5 years after their diagnosis or 70% that will ? Its a balancing act all the time. However, unlike being on the balance ball, I am not getting abs that are stronger. A stronger mind? May be!

In my attempt to regain balance, I headed to the intimate shop that fits for prosthesis and mastectomy bras last week. I had an appointment with an older lady who has been doing this for 25 years, she told me. She handed me a silicon prosthesis (fake boob) and said “feel it”. Yep, that is what had been missing in my life, feeling a silicon boob, “doesn’t it feel like real?” she said with excitement, ” I want you to get comfortable with it”, so despite my modesty and reservations, she plopped this thing in my hands. I wasn’t sure for how long or how much did the “feeling” need to occur. The good thing , someone called for her and she excused herself. Seems like someone needs a lesson in diversity as this thing was very pink, very unlike my skin color. Anyways she returned, this time with a variety of bras in different sizes. She had me try one of them with the prosthesis of course, I must have had a puzzled look on my face, ” The first thing they notice is projection, and I think its just right”. Well you got me sold lady! So for about an hour and half between this lady and the seamstress staring at parts of me that were once reserved only for private viewing, I came home with a pink carrying case of “balance”.

And that is okay, because sometimes its OKAY to get some help from others, when you feel out balance. After all life is a balancing act!

Long Flight

I don’t know how many of you have taken trips to far away lands, but being an immigrant I have had my share of being in cramped airplanes , sitting down for hours . This has prepared me well for chemotherapy. Getting Chemotherapy feels like being on a plane for long, long flight. There is a clear destination. Journey if its comfortable is celebrated, if not ,its still worth the trouble as long as you get where you wanted to. I imagine myself to be on a plane when I get chemo with all the other patients as my co-passengers.The cancer center is my airport.There are delays happening, and  there are cancellations too, when the white count isn’t what it should be.

I have to say though that the check in for chemotherapy is easier than checking in for a flight. And there is no security check point. Just a whole bunch of insecure and disturbed folks waiting to get on board.I hate the cancer center’s waiting room. Its too quiet. If I  had my say it would have blaring music and a strobe light with a big neon sign saying “Welcome aboard and enjoy the ride!”.

The chemo suite offers a plane like chair, “in flight” entertainment and you can get pretzels by pressing a button . The “crew” is present to get you through. The only difference, they ( “chemo nurses”) are actually trying to keep you grounded so you won’t “take off “.This time my nurse checked me in, we were in a room that is on the opposite hallway of where I was to get my chemotherapy and told me “Ok I will see you on the other side”, I said immediately, “Not on the other side!’ She cracked up. Having been with me for the last 3 chemos, she now knows me well.

The Barf bag is another thing common to both settings and one hopes to God that you don’t get to use it. For those who have been to hospitals for deliveries or other reasons, very well know that blue bag ( the one that looks like a wind sock) that’s presented when they see you retching. I get easily nauseated. I vomit easily too. Thus chemotherapy and I aren’t a match made in heaven. I throw up with a migraine, I throw up with the flu , I throw up just like that, when I am feeling blue. I have thrown up during labor, I have throw up post -op, there are  things that make me vomit, there are things that make me not. If only I was an alcoholic, I would have had much less nausea than I had to suffer through. Apparently alcohol use beats up the Chemo-receptor Trigger Zone in the brain pretty good so its not as sensitive to chemo therapy agents. May be its time to take up drinking. This time when I was nauseous, the nurse asked me, “do you want Ginger ale” , I told her not unless she wanted to ‘blue bag it’. I don’t like ginger ale at all. Unfortunately the drink cart there doesn’t have much else on it.

I have 11 more flights to go and I am racking up frequent flyer miles.Once I am done with the remaining 11,  I hope I never earn a free flight and they would ban me forever from getting on. That is my destination and that is my hope.

Hair today, who cares!

How can I blog about cancer and not talk about hair, right? The quintessential image of cancer patient is that of a bald, pale, hairless ,tired looking ashy grey individual. So lately I have heard, ” you look great a lot! ” . I have been told,  I should say special prayers to ward off the evil eye. Really? I already have cancer, what else would evil eye do, make me bald? make me  loose my eyebrows? Put me at risk for heart failure? Infections? lymphedema?  I am already at risk for it ( thanks to cytotoxic drugs). I guess some people think evil eye has a leg up on cancer.

So my hair story starts with the fact that in my teen years I decided not to cut my hair any more, and they started to grow. They grew and they grew and they grew until they were past my hips. I became known for my hair in college. I got suggestions that may be I should do a hair product commercials. Folks asked me for suggestions about their hair and how to make it prettier. My brother noted that there wasn’t much to me besides my hair, acknowledging in ( looking back) a condescending way, that I did have beautiful hair. Gradually it became a liability, an insecurity and a hindrance to my self esteem. Then came medical school and residency and the stress that comes with it. As it took a toll on everything, it took a toll on my hair. I started to loose hair. I was frantic, since it had become such a part of my identity. I would try home remedies , blame evil eye or “Nazar” as its called in our culture for it. Eventually I got fed up of having long straight hair and cut a little bit shorter. I still remember that my grandma questioning me whether I had cut my hair or not. My hair wasn’t mine any more.

Then I got married and now my mother in-law started to cherish my hair and was visibly upset when I cut and highlighted it to shoulder length. As you can tell, I had become highly ambivalent about my hair.( My husband, thank God, never got attached to my hair or its length). Now that i am typing this with a bald head, I have a smile on my face. So who cares that I am bald ( except I am not looking forward to winter). I see my face clearly, I am not distracted by what sits on top of it. I know who I am without that strands of alpha keratin. I don’t have bad hair days any more. Yes sometimes I miss having hair but a lot of times I don’t, and for this new found courage and confidence, I have to thank chemotherapy .Bald head, smile and the weight I am gaining around my tummy, I might get soon get a job outside an Asian restaurant !