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Calling Stage 4 Breast Cancer A Chronic Disease Is Ludicrous

“We have so many treatment options available to treat what you have,” said the first oncologist seeing Uzma upon diagnosis of stage 4 breast cancer, “that these days we manage it like a chronic disease.” The renowned oncologist Uzma saw for a second opinion said the same, as did the one she saw for a third opinion at an institution that is renowned globally for cancer treatment. It’s as if they are trained to read from the same script. It’s a lie.

In doctor-speak, a chronic disease usually means diseases like heart disease, high blood pressure, high cholesterol, diabetes, etc. You get the picture. Every person with high blood pressure has probably heard their doctor say, “High blood pressure cannot be cured, but it can be controlled. You will have it for the rest of your life. But if you take your medication as prescribed, you will be okay.” Some patients with chronic disease get upset at the prospect of having to take medicine for the rest of their lives. But no one with high blood pressure thinks that the rest of their life means 3-5 years.

There may be many treatment alternatives available for Stage 4 breast cancer, but it is nowhere like a chronic disease. Stage 4 breast cancer has a median survival time of 3 years. In other words, half the women who suffer from it die within 3 years of diagnosis. It has a five-year survival rate of 22%, which means that only about one-fifth of the women with this affliction are alive 5 years after diagnosis. At 10 years only about 1 in 10 are still alive. How many diabetics do we know who died within 3-10 years of diagnosis?

And what are those 3-5 years like for those four-fifths to half of Stage 4 breast cancer patients? If they are anything like Uzma’s last 3 years, they are a time of trying one chemotherapy regimen after another while cancer continues its long, unending march. And chemotherapy is nowhere like medications for diabetes, cholesterol or heart disease. It is a blunt tool, a cannon brought to a fight where we should be using snipers — only we don’t yet have the targeting mechanisms for snipers to be effective. We have the promise of immunotherapy just over the horizon, but it remains a mere promise for most individuals with Stage 4 cancer today. Uzma was rejected as a subject for an immunotherapy study at the National Cancer Institute. As I said, we don’t yet have cancer-snipers. So we use cannons. Between the guerilla army that is metastatic cancer, hiding inside one organ then the next, and the cannon that is chemotherapy, there is a lot of collateral damage. The temple that is the human body slowly crumbles before one’s very eyes.

Chemotherapy, depending upon the drug, affects the patient’s skin, her hair, her bones, her brain, her nerves, her heart, her soul. Yet, she keeps taking it because in hope that the regimen could put her in remission. Sometimes, it’s just an elusive dream of few months-long breaks in cancer’s march is what makes a person keep on standing in front of one cannon after another. Eventually, cancer takes over enough organs or enough of key organs that the physical edifice can take no more cannon fire and active treatment is discontinued.

Stage 4 breast cancer does not behave like diabetes, high blood pressure, and heart disease, and oncologists need to stop using the chronic disease metaphor. It is unfair to patients and their families because it creates unreasonable expectations. I think I understand why they use this metaphor. It is probably to provide reassurance so that the diagnosis of stage 4 cancer does not end up draining all hope right from the get-go. But the reassurance comes at a price — one that is paid ultimately by the patient. But, that’s a topic for another post.

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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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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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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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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!

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Funny Bone

It’s hard to be funny when you are in pain, even harder when the pain is in your bones, thus making it hard to connect to your funny bone since all the marrow of all the bones is chatting up a storm.

Yes, I have had my first round of chemo. I want to clarify though that I have an issue with the term chemotherapy. I would call this “getting cancer fighting medication treatment through IV” rather than “Chemo.” It just sounds horrific and toxic. I really think that the oncology community should consider re-naming Chemotherapy. Chemotherapy sounds depressing, something that is being done to you rather than you the patient, going in with will and optimism to get the recommended treatment. The term “chemo” provokes fear, fear of loss of control, fear of baldness, fear of being tired, fear of looking like a cancer patient.

Anyways, I did get my first “chemo” a few days ago, and always falling on the edge of statistical curves most of my life, I excel here too. I had an allergic reaction to a cancer drug called Adriamycin. For those that have never received chemo, there is an extensive foreplay of drugs that are administered to minimize the side effects of the chemo agents. I arrived at the oncology suite at 11:30 am and till 2:30 I was still being pre-medicated. Unfortunately, the grand finale of the red juicy juice infusion resulted in a swollen lip and itchy tongue.

I always have an itchy tongue, and most of the time it leads to  wrong words that come out at wrong times. But this time the tongue really itched, and the only words came out were, “My tongue is really itchy.” The staff promptly dealt with the reaction and now I am the “trouble maker” at the cancer center. The next day when I went for hydration, I was “The Girl with the Adria reaction” – a distinction that, I hear, is rare.

Then came the Neulasta shot, a medicine given to keep my white cells up and hopping, but it causes all the bone marrow to hop, and thus the pain. So here I am, having had the taste of chemo (literally too, its kinda metallic), thinking what it will be like the next time. All I know for sure is that I will still be me, and then rest will depend on how my body will choose to talk to the chemicals. I hope for my sake, they get along this time.