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Dye another day…..no, not another day

Who would have thought that after a year of grueling cancer treatments, the step that would feel like THE conclusion to the process would be some hair dye in a bottle. Yesterday I said bye to cancer hair. I woke up and decided this is the day to end it.

End what? In my mind, an official end to the cancer tenure in my life. I was finished with treatments but it hadn’t felt like the end until now.

I am amazed at the power this has had. I feel well again, I feel “undiseased”, I feel “normal”. I was unaware of how much I couldn’t stand the gray.May because it whispered “cancer cancer cancer” as I looked in the mirror. May be it reminded my of the time when my life had lost color. May be it was familial.

My grandmother who has passed away now, used to have her hair dyed way into her 90s. It was a routine to go to grandmas every two to three weeks to help dye her hair. As I got older, I became the assistant to my mom in the process. She had long beautiful hair and I enjoyed combing it very much especially as she got older and could no longer sit up, so she would lie there and I would comb her hair spreading it out as I pleased. It was a wonderful connection between 3 women and 3 generations. My mom has always kept her hair short but she also is militant about keeping up with the color. So it was but natural for me to have lots of ambivalence about the gray hair received as a parting gift from the cancer treatment.

It seems that some memories had gotten woven into the silver that I no longer wanted to reflect on, braided in were the glimpses of nausea, fatigue and melancholy and  this silver needed to be tarnished so it was no longer vividly potrayed times that were painful, times that were sad, times that were challenging.

I wanted to join in with the mainstream women. Women that get hair cuts and go to the salon and chit chat with the hair dresser, not the chemo nurse. As the stylist was combing my hair, he asked “Am I hurting you?”, an innocent question but nonetheless a trigger to  flooding thoughts of IVs being put in mixed in with the question “Am I hurting you?”. I smiled at him and said, “Absolutely not! “.

I had never imagined that dying my hair would be such an emotional celebration and would feel like such a triumphant ending, as if I have prevailed over cancer. I will admit that I was a little startled when I looked at myself with the dark brown hair I used to have, I hurriedly  looked away and then I looked again. This time I saw my self, just my self . That is all I wanted to see, no more no less.

 

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Going Back

A year has passed since I had a normal mammogram and a normal ultrasound. It was time to go back  last week.

A few weeks ago I had received a generic letter explaining to me the importance of mammography screening and how I needed to make an appointment to get one! Yeah right, the medical betrayal of sorts ,the false security that a normal mammogram have given to my surgeon and I, that test. The test that for lucky ones leads to early diagnosis and treatment, the test that can diagnose stage 0 or 1 cancers.

I thus grudgingly returned to the breast center. What I was unaware of was how much of a disturbing process it was going to be.

 I have treated many patients with Post Traumatic Stress Disorder, very aware of how places, things even scents can trigger memories, memories that the mind tries to suppress but instead they flood with overwhelming intensity. Being a psychiatrist did not render me immune to such processes  my self, whether I understood it theoretically didn’t affect didnt matter.

I was calm until I changed into the gown, put my stuff in the locker. This time as I hung up a bra that was a mastectomy bra with a prosthesis.I slammed the locker shut but it didnt do much to the gates that were starting to open.

Then I sat in the waiting room. As I sat and waited, a wave of emotion started to rise, a scalding mix of anger and melancholia , at odds with each other, the kind of emotions that ball up in your throat to the point that the windpipe can no longer freely move and the air struggles to go in and out.

The kind of emotions that get the whole body riled up in mutiny, with muscles being tense and the stomach in knots. A “why” slowly tried to rise in my mind which my rational brain promptly suppressed.

This last year, nothing in this room has changed, the chairs are in the same spots, the carpet looks the same, the walls and paint, exactly how I remembered and then I thought of this year as I experienced it and nothing seemed the same.

I was suddenly face to face with how life has moved on and is still the same for many and will continue to be.

The technician peeked her head calling my name. This one looked like a sub, for I had not seen her before.Excruciatingly matter of fact  and dry and her demeanor matched the feel of the room just right …cold and distant. And then “squeeze time” arrived.

My only breast, squashed between two plates like a specimen on a slide, literally. My mind flashed a picture of my deceased breast after the biopsy and the mammogram squeeze that led to bleeding from the biopsy site.I saw blood spread underneath the acrylic plate.

I so wanted this to be over. I don’t want any more mammograms please,I wanted to scream, I just wanna go home.

The technician disappeared to review the images with the radiologist as was taking shallow breaths. She reappeared still stoic, we need some additional views.

Now I really wanted to just leave. I wanted to tell her, “Listen I have seen the worst, I have gone through the worst, it wouldn’t  be fair if you saw more”

Some more squeezes later, I was let go. My heart refused to respond to any zen thoughts my mind threw towards it and it remained defiant. I was not ready to hear another sentence starting with “I am so sorry”, I have done that.This cant be happening.

.As I then proceeded to see my breast surgeon my anxiety spiked.He presented with smile and told me that “it was nothing”.

I am not sure if I did feel relieved . Is every thing really normal? That is what he said “last time” but was it… My throat was dry, my mind felt drained.

But what is the other choice? This is my fate as long as I live, monitoring and scanning, missed beats and shaky hands. It comes with the package. Fear is the side served with cancer, and periodically you get seconds even when you are full. I just hope I am done with the main course …for good.

Yes despite 33 radiation session , I neither glow in the dark nor do I emit hazardous rays. I have had many ask me if the actual process of receiving radiation is painful and the answer is no. When I was receiving the radiation, I didn’t even feel heat or warmth.The room was usually cool and they  would always ask if I wanted a blanket.

The pain that I  had was a direct effect of a burn caused by the radiation process and its cumulative.

Relationships affect us in a cumulative way too. Its never a direct burn. Its always a sum. Life is like that too. We are a net product of all experiences , good and bad, joy and sorrow, hot and cold. The math is never accurate, its approximate, it depends a lot on the one gathering the data.

Cancer teaches math well. It helps to approximate well.You tend to round things to the next whole. I see things more complete , more whole numbers, less fractions.Subtraction is easy, things and people both. Addition is valuable.

I hated math growing up. I understand now. I always looked at the bigger picture not the problem at hand. Medicine thus was a better fit. It helps me to see survival rates of cancer approximately. Just knowing that doctors believe that this an illness that you having a fighting chance against. Real numbers are too precise. Life isn’t. Miracles don’t make mathematical sense.

Life is random and vague, where sometimes blessing multiply over and over again.

 

 

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I was, I am , I will be

It will soon be a month since the treatment ended. I feel that I have returned to life. The colors, the smells and the touch. It all feels right again. It all feels familiar. Some of me is familiar, some of it is not. But I am getting used to it. There are things I refuse to get used to, like the pudgy chemo belly or the flabby arms but mostly I am accepting of who I am now. I wonder now, what do I need to be?  As I count my blessings for my life having been spared, what is my purpose?

Do what I was doing before the interruption called cancer? But do it better? or take on new tasks ? I guess that is life…. repurpose, reinvent. I survived, how do I celebrate this life? Appreciate it to the fullest?

Today the yoga instructor was talking about resilience and mindfulness, and how challenges arrive unexpectedly and will happen to all of us. How we deal with it is where its at. How does one live in the here and now and still serve a bigger purpose. Here I was obsessing before class as to what t shirt to wear that wont show the burns around my neck from radiation and now all that matters is the deep inhale and exhale, the calm and the peace.

Its all in the mind, as long as we stay connected with it, during good times or adversity.

Its the circle of life, pay it forward, breathe, connect and stay well.

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Last mile

They say the last mile is the hardest. I agree. I have never ran a marathon but I know the last mile isn’t about the legs, it about the mind.Those who cross the finish line do so with their mental strength .A conviction in their ability to do this. I am sure they hurt as their feet pound against the ground and that wave travels up into the knees and hips, the painful vibrations and jarring with a strong urge to stop.But something makes them go on.

In the last 2 weeks of radiation , I have secretly desired to stop. There are times when I am driving to the hospital and I fantasize about taking a wrong turn. Sometimes, I wonder about going to the hospital to just hang out at the cafeteria and have coffee.The gift shop always feel a nice escape. I haven’t done it so far but the urge keeps getting stronger. I keep hearing from others, ” Oh radiation should be easy after chemotherapy!” .Yes, I should be used to adversity by now and perhaps more skilled at dealing with the crap that life dishes out at me. I have to admit though the despite being a physician I was not prepared for radiation burns.

What I did not comprehend fully,  was the fact  that the  goal of my treatment team was to actually burn the skin that has been stretched and pulled together, sewn in a crooked way with the belief that reconstruction would fix the ugliness of it. Over the weeks it gradually started to look red and angry, the protest became remarkably painful. Then it acquired an ashen tone and then it decided that it had has enough and since then has attempted to take off , piece by piece. 28 radiations and the disappointed skin has almost left, giving me a chance to start over. The big rectangle of pink erosion is the guarantee that I can.

The last step of cut, poison and burn, I should look forward to being done with treatment and be thankful of having the opportunity of thinking of a future, uncertain, nonetheless a future.

For the last seven weeks, when I check in at the desk, I would tell the friendly receptionist ” I would like it medium rare” and they would chuckle. Pretty soon it was “well done”, then ” extra crispy” and now “sushi (raw)” . Happy to have kept them entertained in midst of the darkness of cancer they deal with every day.

Nothing worth doing is painless, radiation isn’t either.

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Battle Scars

The battlefield never looks pretty after its over.There is damage and debris all over.The smell of smoke and burnt wreckage, the sensation of loss and emptiness, the echo of silence, the dampness of tears . A lot of work is needed to rebuild what once used to be. The scarring , the pain and remains of time gone by.

The toughest challenge in the fight with cancer is to work past what you used to be. The strength, the energy, the ignorance. Having seen more than you have wanted to, its hard to go back to the blissful ignorance.

How do you rebuild a house on a land that you know is prone to earth quakes? Do you really put effort to make everything again on shaky ground? Not sure whether that land has another earthquake in it…….. the one that is likely uproot all that you have put together… again.

I have no choice, its my land and that where my home is. This where I rebuild and pray for it stay intact.

I have to focus on building not what might wreck it but focus on healing from the scars of the battlefield. The ache in my arm reminds of the weight of the weaponry I once carried. The scar on my chest is my medal of honor. The stains of my nails tell me how I clung on to life through all of this . And what better reminder of war than a shaved head. All soldiers look alike in the battlefield so do all cancer patients.

Some return home , some don’t.They are both survivors in their own way, either returning to the bosom of their family or the arms of mother earth but they do belong somewhere. Somewhere where peace awaits them.

You rebuild your body , knowing its the body of a soldier, it needs to be in top shape should the call of battle come again. You build your mind, the mind of a warrior who can switch gears in an instance. Your body that has aged many years in few months, you mind has aged to the point that  death and dying are utter realities, not concepts that you wait for till ripe old age.

Just as physical scarring needs stretching and exercise , emotional scarring needs rehabilitation by stretching the mind and exercising gratitude daily. Living requires daily effort… without it , using breaths is futile .We need to do it, with or without cancer.

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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.