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Mother, Daughter And Breast Cancer

“This will doom my daughter,” my wife Uzma said while we were waiting for the results of her breast biopsy in 2013.

As expected, the news of Uzma’s breast cancer diagnosis in 2013 brought fear, anxiety, and sadness of unprecedented proportions in our life.
What will happen to me?
What if the surgery doesn’t take out everything?
Will chemotherapy work?
How will I survive chemotherapy?
How will we manage all this with our young kids?
These were some of the questions I remember Uzma asking back then. Almost anyone with a heart can imagine that someone with any cancer diagnosis would ask these questions.

But worrying that early about our daughter and her risk of breast cancer is something that only mothers and those who can learn to listen to mothers can understand. This concern was a recurrent visitor to Uzma and my discussions.

She knew it was no fault of hers that she got breast cancer. When determining a woman’s breast cancer risk, doctors ask, “Do you have a first-degree relative who was ever diagnosed with breast cancer?” And our daughter’s answer will always have to be an unequivocal yes. Uzma never could get this thought out of her head.

It wasn’t something she dwelled on a lot because there was nothing she could do about it. It was the hand that fate had dealt mom and daughter.

There was also a part of Uzma that thought there was a silver lining to her diagnosis. Two of her aunts had breast cancer. But because her mother did not, this family history did not matter in determining Uzma’s risk of breast cancer. Uzma believed that had her mother also had this scourge, her own dense breasts might have led to more aggressive investigations. And it might have made the difference between being diagnosed at Stage 2 vs. Stage 3. That would have meant a difference a prognosis. Uzma believed that her cancer will give our daughter a better chance at an earlier diagnosis.

There was a third reason that Uzma learned not to dwell too much on our daughter’s risk. It was the knowledge that genes aren’t everything. Which genes influence changes in our bodies at which times in our lives are affected by various environmental factors. The the quality of our childhood, our diet, our physical activity, and stress are some of the things that are known to affect which genes get turned on and hen. While genetics has come a long way in the last couple of decades, we still don’t know how to turn on and turn off cancer genes in a way that will make a difference in people’s lives. Even though our daughter’s risk of breast cancer will always be greater than a person without a family history, as long as we help our daughter grow to be a psychologically resilient, physically active person who eats healthy, her risk could be lowered.

[A word about the featured photo: This is a print that Uzma purchased about ten years ago, and it hangs prominently in our home in a large frame. It depicts Lord Krishna and his mother, Yashoda. Yashoda was not his biological mother but raised him as her own. Hindu children grow up hearing stories of her love for Krishna, who would have been a handful for any mother due to his mischief and daredevilry. Uzma was not a Hindu, but the image touched her as something that beautifully captures the bond between mother and child. When he was about two years old, our son believed that this image was of Uzma and him. Later, when our daughter was about two years old, she thought that it was Uzma and her. They both outgrew that belief, but there’s something in this image that captures and conveys maternal affection even to a child.]

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Radiation continues…

When you go to the hospital every day at the same time, you start noticing a lot. You know where the parking spots are typically open, who the valet guy is , who is the one over seeing hospital housekeeping, the schedule of the coffee runs.The crowd outside the OR with big books or e-readers prepared to wait for someone seem the same although its a different group every day. The rhythm of waiting rooms, the sounds of the hallways and the footsteps of the staff.

The radiation oncology waiting room is a collection of chairs next to a long hallway. The crowd remains the same every day albeit some minor variation…….the very anxious hispanic lady with her baseball cap ,always accompanied by a family member, the older guy with lung cancer and his occasionally present wife, the ukranian lady who wears a cape, the elderly guy in the wheel chair who flirts with the receptionists when he is not dozing off and the goth lady who talks mostly to the patients that wait for their MRI in the same area. We see each other every day and although there is no overt acknowledgment, we all know that we have the same enemy.

Today, there was a new guy, the patients weren’t moving in predictable fashion and it seemed that they were running behind. The new guy was approached by the technician who reported that he is getting late for his chemotherapy, the technician asked, “how long does that take you”, the new guy replied” Its my first one”there was a wave of palpable empathy in all sitting there, in that moment we all felt one, connected with this bond of experience that was common to all of us. Even the aloof ukranian lady sighed.

Daily appointments are draining , they are a daily reminder that you are sick and need help. Its taxing to the psyche, having to go in every day. Feeling good during treatment is deceptive because you feel well yet you are a patient. Dealing with cancer means rearranging a lot in your life including how you think about life. Feeling well is a blessing that needs to be appreciated daily, the day you don’t hurt, the day you arent exceptionally tired and feel clear in your head is a good day and should be appreciated as such. Gratitude needs to be the routine with every passing day. There is hope and sometimes it comes out of a machine in form of rays on a daily basis.

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Operation Shake and Bake

My idea of relaxation is certainly not staring at a crooked poster on the ceiling of a hospital room with heavy radiation equipment around me. I don’t think the hole at the center of the poster through which the red laser is peeking can convince me or another patient that they are  looking at a scenic island with clear water and waterfalls. I ponder, if everyone believed in the same God, it could have been possible to have a heavenly image up there and then when a beam comes out of this hole, it would be more believable as a divine intervention and healing. I have no idea what is coming through here. Chemotherapy is something I saw and felt, had side effects to so felt more real. This, I just need to have faith.

Laying on the radiation machine with both hands up and breast exposed is not the most comforting positions. “Hands up” always evokes feeling of fear and unpredictability, and anxiety of what may happen. Our brain is fascinating at making associations and the association of both hands being up is that of being vulnerable. I am here to get radiation treatment with the desire to get any stubborn cancer cells that may have survived the surgeries and chemotherapies.

The ladies at the reception seem familiar with the crowd in the small tightly packed waiting area. They should be since radiation treatment is given five days a week for several weeks. They know patients by their first name and usually their accompanying friend or relative. When I declare, I am here for my shake and bake, they crack up. (My radiation oncologist is Dr. Sheikh). They are not used to chirpy cancer patients, and I notice that the chairs in the waiting room are occupied by humans with very depressed affect and sickly demeanor.

Radiation Oncology is a topic not much discussed in medical school unless you inherently are interested in finding more about it. It is usually a department tucked away in the basement of a medical center or in an area that many don’t pass through. So despite being a physician, I had no idea what goes on in there until I arrived there as a patient. The presence of equipment seems to have had some robotic effect on the staff too. Or is it that the principles of physics that over-arch the principles of empathy that is so prevalent in my world of psychiatric medicine. The appointment begins with changing into a gown…ah the dreaded hospital gown. This will be the routine for another 32 days. Being a sucker for unique products, I have acquired the “radiant wrap” which is a designer radiation gown for breast cancer patients. However that doesn’t really make the ordeal any better. I am neither more radiant nor more covered.

I walk into the radiation room, and its cold and dark. There is soft music from a radio channel that doesn’t add much to the ambiance. There are women in lab coats, i.e the technicians who quickly line you up in the right position. Of course the black marking on my chest with markers help them align the machine. Reminds me of the old embroidery machines that I used to watch with fascination at the street corner as a child. How the craftsman would line up the needle on the careful drawn on design and give the machine a whirl. Well, now facing me is a round disc attached to a huge machine arm emitting rays that intersect right at the spot where the “x” is on my chest. I can see my image in the glass. I also see, the machinery inside opening tiny metal doors with a disturbing screeching sound. I lay still, with my chin up since I don’t want my chin to get the radiation. Then I breathe. After few seconds the machine moves and now its angled to my side and I can see the darn poster again.

I am quite skilled at imagery and have taught it to my patients many times. But now as the radiation equipment moves around me,  I just can’t summon the power to imagine that I am basking in sun light on this island full of water falls. What I have gotten good at though, is believing that the little energy bundles that come out of the machine are hitting my skin and making sure that all rogue DNA is blasted away one by one. 32 more treatments to go, I softly pray, and hope for the healing rays to make me disease free. Then perhaps soon, I will vacation at a real island and won’t have an “x” mark on my chest.

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A Case Of Breast Envy

As a psychiatrist, I have read about penis envy in girls as proposed by Freud. What I had never experienced until recently was  “breast envy.” Yes, envy of other women who have two breasts. My recent trip to a water park uncovered this psychological issue.

I have to say that going to a water park right after chemotherapy ended was a bit of a challenge. From buying a swim prosthesis to finding water proof eye brow pencil, it was a quest but I am happy to report that it ended up being a rather cathartic and relaxing.

The first day arriving at the water park resort, I used my wig as an excuse to not get in the water. Chlorine will ruin it, I claimed. I was unsure of getting in the water and losing my hand drawn eye brows. I had also read that all prostheses absorb and expand in water. I was nervous of this expanding proposition. So I spent most time staring at other women and their breasts curled in the lounge chair. Creepy, may be… but I was more like a kid who is watching others eat ice cream when his fell on the ground – envious and wistful, thinking, “I once had two of those too”.

Women walking around in swimsuits, women with two breasts, women without “ports” in the chest, women with hair, women with pony tails, women with eye brows, women with eye lashes, women with toned abs. One woman in her cheetah print swim suit was mammarily gifted, I thought, “how would she react if I walked up to her and complemented her?” Cancer gives you courage, but also the wisdom to not use said courage on all occasions. I kept the complement to myself. Then, I suddenly realized… I was checking out other women’s boobs. What is wrong with me? Perhaps this phenomenon is breast envy. Nothing unconscious about it though!

The toughest thing about the grief of the loss of a breast is that one never gets a chance to mourn it fully before the whirlwind of treatment starts to blow you away. When someone dies, there is a proper service, then the family gets a chance to gather and regroup , comforted by loved ones. When your breast dies, the postmortem report, i.e the pathology report is handed to you, usually with more disturbing information than the demise itself. Then instead of a quiet period of mourning, you are sent off to deal with the harsh reality of chemotherapy drugs. No break, no memorial, no time to grieve. So as you recover from chemo, you get moments here and there to work through the grief and therefore, it isn’t unusual that for some, this grief ends up lasting a life time.Complicated grief usually does linger for long.

Having had a few patchy moments of working through my grief, I felt ill equipped to handle the boob fest around me. I envied the women in their two piece bikinis. Being a modest woman, I would never be caught dead in one, but just knowing that I couldn’t rock one like some of them bothered me. I could never buy a regular swim suit anymore and will always have to get a “mastectomy” suit with high neck. Again,not big on exposing but just saying! I had to keep reminding myself to take the prosthesis out of the suit before throwing it in the water extractor.I couldn’t get myself to use the shower in the women’s locker room. I imagined being talked about in hushed tones by the teenagers with body piercing and dark hair.

The next day, I decided I wanted to have fun, so I put my cap on (instead of the wig) and got in the water. It felt nice. The statistic of one in eight women in US having breast cancer was weirdly reassuring that I perhaps, wasn’t the only one here in this huge water park and that there must be others here struggling, just like me. I took the ride on the lazy river, the only thing that I usually do at the water park. I am not the one to do the slides, for one I don’t know how to swim and secondly I was always too scared. My kids on the other hand are little dare devils. So my husband asked the kids if they wanted to go down the big slide in the family raft and they happily started following him, then he said to me, “You can stand over there and you can see us come out.” He knows very well, I don’t do rides.

I looked at him and asked, “Can I come too?”

He looked at me puzzled, “You mean on the ride?”

“Yes,” I said, explaining, “I thought to myself, for the last few months, I have endured a lot of pain and suffering, how bad can this ride really be? No more than a long day in the ICU getting chemotherapy? Am I really afraid of coming down a slide in a water raft that lasts barely a minute?”

I joined them in the line.

Three times over, I came down the slide in the raft screaming at the top of my lungs, completely ignoring the sinking feeling I got as the raft plunged from the height, twisting and turning. Completely ignoring the fact that I can’t swim, I embraced that moment of thrill, the here and now.

I am no longer afraid! Cancer does that to you. And during the ride it didn’t really matter if I had one breast or two.

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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!!

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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.

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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.

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Shopping Center

After having had a mastectomy, I have often wondered if the center for shopping in women resides in the breasts. I will admit that I have less urges to shop and less interest in watching QVC. Women shop for all sort of reasons. I shop for what I need, for what I think I may need, and for what I think will no longer be available if I don’t buy it right now! I own Spanx at my ideal body weight just in case that changes. Retail therapy, they call it. Unfortunately, it does work. How can the smell of new leather boots with studs and fancy buckle not perk one up? No, I am not talking about breasts, no pun intended.

Having breast cancer opens up a whole new market for shopping. Head gear, wigs, bright lipsticks to off set the bald head, scarves to look more feminine without hair, new skin products since skin dries up with chemo, some pink breast cancer awareness stuff, charms for the Pandora bracelet, inspirational necklaces, and of course a new hand bag to carry the stuff around! Honestly, its a  lot of fun.

You can probably tell that I have somewhat of a shopping addiction. Okay, I do, since I have tried to give up shopping, but it hasn’t worked. Three months is the longest I have stayed “sober.” Building the “mastectomy nest”  was also a lot of fun with a cozy blanket, reading material (gotta have new books for recovery time), spray-on lotion (my legs get itchy), fuzzy socks, front open pajamas (can’t move your arm much post op), chocolate-covered coffee beans and pain meds. Oh yeah! Besides the pain of course, it was nice to laze around in a La-Z-Boy recliner and take naps!

I know that many people get all Zen and all after having cancer. But I can’t help it, I really love my stuff. I was so happy when my daughter was born, an heir to my hand bag collection. I know its great to live simply and to have less things, but when you know that you may have fewer days, you gotta have something to hold on to. I would much rather unstuff my life of emotional baggage, of dead-beat relationships, of toxic people. That to me, is much more valuable.

Cancer does help you sort through the maze of complex relationships and helps achieve clarity of who is worthy of your time. I feel more ready to decline invitations to parties I don’t want to go to, to say no more easily to time-draining, emotionally stressful adventures, and value my time more. Yes stuff is investment of money, but what I worry about now, is investment of time and the return it will bring me. It means selling all the dead emotional stocks and freeing myself. Yes, I need emotional chemotherapy too! It takes time but I am ready like never before. As I am writing this, I notice that a clump of my hair in my hand. Oh, the shedding has begun. Gotta log off, I forgot to buy the wig liner, and I have to dye the hair pink before it’s all gone.

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What Doesn’t Kill You…

Somehow this song has been doing rounds in my head, persistent just like the low-grade nausea after chemo. They say, “What doesn’t kill you, makes you stronger.” So I think, by this time I should be able to wring the neck of an elephant with my bare hands (not that I have anything against my pachyderm friends), and probably a whole herd after 16 chemo sessions. Every needle poke, every breathing maneuver, every moment in the scanner, every noise of the breathing of medical equipment is apparently making me a stronger person.

So I accept it. Not that I have a choice anyways. I was told this clearly again last week when, due to my Adriamycin allergy, I had to see an immunologist for a consultation. She is hell-bent on giving me my  Adriamycin. “What choice do you have, you need your chemo!”, says she. So in Uzma vs Uzma, the cancer fighting part of me will be whipped into shape with antihistamines and a generous helping of steroids.

I did finish a 5K this weekend. No I didn’t win, they are not giving me the steroids of the right kind – nudge, nudge, wink, wink. As I was walking, I was wondering whether I would be able to finish and really what is the finish line for me? One thing I know for sure is that I have to cross the finish line before one rogue, mutated cancer cell does, that all of my healthy cells are pitted against a small group of very extremist cells. Cancer seems like a terrorist activity of sorts. A small group with a different philosophy on growth and expansion vs. others who are living ordinary cellular lives staying in their place, not venturing to nearby organs and convincing them to join “the cause.” And chemo does not negotiate with terrorists, and boy, is there collateral damage!

Speaking of collateral, I took my daughter in for a flu shot, and guess what!  She got a blue Popsicle at the end of the visit. Makes me wonder, what happens to the guilt of doctors and nurses with adult patients. So far, no one has offered me a Popsicle anywhere. Not even a sticker. Or a sucker. Oh I get it, because it’s making me stronger. Otherwise can you imagine? “Thank you Dr. Y, you are done with your infusion and here you go –  your gallon of ice-cream and what color Porsche would you like?” Then my thoughts got interrupted by what my daughter was listening to, “Down came the rain and washed the spider out, out came the sun and dried up all the rain, and the itsy-bitsy spider went up the spout again!” Got to get ready, second round of chemo in 7 days. So stay strong my friends, stay strong!