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When Time Is Not On Your Side

A big part of dealing with an incurable illness is a sense of grief and an acute sense of shortened longevity.

One may argue that people die every day so no one has a guarantee in life. Fair enough!

But do you not save for retirement? Maybe not, since nothing is guaranteed, maybe spend it up, live a little? stop planning for the future?

Take each day one by one but not plan any savings.

Give up long-term dreams of travel because there is nothing certain.

Do you not think about seeing your children grow up or that is something that doesn’t matter?

Do you not dream of working and then retiring and relocating to a place of your dreams?

Do you not wish to see your kids graduate, married, and have grandkids?

Do you not want to be there when they need you as they get older?

Being there every step of the way for your spouse?

We all plan these things. That is part of life.

In that context even a 15-year survival ( the number I hear a lot) is still a huge adjustment, is it not?

I am thankful for each day, but it’s an adjustment to my new reality. A grief process, not lack of hope, not negativity.

– Uzma Yunus, Facebook post, March 17, 2016

[To read my approach to publishing her Uzma’s unpublished work and her posts on social media, read this. Featured photo by Eric Rothermel on Unsplash]

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How are you doing now?

How are you doing now?

” How are you doing now?” is a question, I get asked with a fair amount of consistency. The sentence feels jagged and the “now” a bit piercing. Don’t get me wrong, I am thankful that I have well wishers who are interested in my well being but it’s a question that provokes a certain melancholic grief. It reminds me of “then” when things were particularly rough and excruciating .A treatment storm that grabbed me and swirled me around with dizzying intensity and then abruptly let go of me. My head is still spinning and my feet are still unsteady but I am out of the storm. No longer safe from the anxiety of another one that may creep up on me some day but the initial storm has passed.
The now, this. This the life after cancer.
I am quickly approaching the anniversary of the end of all major treatment towards the end of this month. I am still trying to figure out , how I am doing now?
It’s hard to not compare myself to where I was, about 2 years ago. I am considered “fresh” or “new” among the survivors who are many years out. Some are living life with Stage 4 cancer, some are quietly happy for the passage of time without major storms, some have seen more than one turmoil. We all however, live in fear. A fear that is an inevitable part of living after treatment, now.
The fear that haunts every time there is an ache or pain. It is ,but of course cancer, is what your mind says. Every back pain is cancer in the spine, never mind the pulling and lifting the day before. Every dizzying spells is metastatic disease of the brain and every bout of indigestion may the omen of cancer in the liver. Even though I am a physician, I am not immune to this post-cancer neuroticism.

At the heart of all of this, we cancer survivors, live with loss of control over our bodies. We have been subjugated by our bodies, rebellious and rogue. We despise that.
We , then, turn to things that will help us tamper that fear. Food usually becomes a bit of a preoccupation. It gives us a sense of control.” I can choose what I eat”, I can’t rid myself of the fear but I can eat the “anti-cancer diet”. Suck it up cancer! I am in charge.
There are anti inflammatory cancer diets and sugar free diets. All efforts directed towards that chance that the cancer won’t come back. In my heart I know that it’s just hopeful indulgence. Although dietary factors certainly affect the incidence of cancer but if 16 cycles of hard core chemo drugs failed to rid me of the cancer, my kale smoothie is unlikely to turn my fate.
But I do it any ways. I try to eat the 6 servings of fruits and vegetables every day. I regularly take my Tamoxifen. In entire last year there were 6 doses I somehow missed. For the rates of medication compliance in literature, its pretty darn good.
I go to yoga and walk regularly. I have lost all the extra pounds that had befriended me during the steroid fest with chemo. I try to minimize stress and sleep at least 7 hours every night. It’s all healthy but will it prevent a recurrence, I don’t know. No one can answer this question and that’s why I keep doing it, my hopeful indulgence.
Taking supplements get tricky. I worry about supplements interfering with the absorption and action of Tamoxifen I take. Eastern medicine, alternative things, acupuncture, all sounds like wonderful ways to deal with the fear head on.
When treatment ends, even though there is a great relief, there is a parallel anxiety of nothing is now being done to fight with the cancer anymore. You are on your own. To pick up and clean up after the torrid storm.
My physical energy is slowly improving. Yes post treatment progress is slow, painfully slow. Every day is a challenge to stay energetic. I work two days a week and feel quite exhausted by the evening on my work days. I hurt overall sometimes, just a low grade achi-ness. I sometimes get overcome by saddening emotions and I feel like saying ” I don’t want to live like this”, “I don’t want this monkey on my back” “I don’t want this shadow behind me every minute of every day”.
Sometimes, I wish I could be in denial. I wish I could pretend it’s all over and close the window and slam the door shut. I wish I could be sure that I have indeed survived. But with cancer, you dont have such emotional luxuries. It’s there. You live it every day. the reality of cancer.
So how am I doing now? I am managing. I appear to do be doing everything I used to just on a constricted scale. The ever present fear, is a hole in one’s emotional reservoir and there are days I feel emotionally depleted. Then, there are days when everything feels beautiful and I am thankful for being alive.
It’s an ever changing emotional landscape in the mind of a cancer survivor.
I am trying to carry on with grace what life has handed to me, one day at a time.
I continue my grieving process. I have lost the privilege of calling myself healthy, I grieve the ability to plan retirement without a little voice saying “let’s hope”, I am no longer confident that I will see my children’s high school graduations or weddings, heck, I fantasize being old and in a nursing home.
I could be “positive” as I am told to be, but these thoughts stay in mind head. The only time they will become dormant is when I am far, far away from the diagnosis date. They will never disappear but may be less audible.
So this is me , now and I think I am doing as best as I can. I am being patient, I am being thankful, I am trying to not take a day , a moment for granted, I stop and smell the roses and the coffee and my daughter’s hair. I am trying.

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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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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

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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!