Happy Birthday to Me!
Second cancer anniversary, reposting from last year
Page 14 of 21
15 random things about me
Responding to Nancy’s point ‘s blogging challenge:
1. I lived at home till about 25 and then picked up and moved alone half way across the globe.
2. I have circled around the earth once.
3. I can burp on request.
4. I can read four languages.
5. English is not my first language.
6. I hate mathematics
7. I draw and sketch.
8. I don’t know how to swim but recently started to learn.
9. I am allergic to Adriamycin
10. I hate peeling potatoes and cutting cantaloupes
11. I cannot stand the smell of a boiled egg.
12. I dont have my gall bladder.
13. I enjoy talking to strangers and make friends easily
14. I enjoy traditional Pakistani and indian food and cook it too
15. I dont have a middle name
Slow Down
It’s a rather typical spring day in the Midwest. The sun is out and it appears deceptively warm. It’s the kind of day that you want to step out without the much needed jacket in this part of the US. The wind however is blowing making it feel much cooler.
My kids and I want to go to the “lake”, a small made lake in our neighbor hood, for a “treasure hunt”, what an adult would call a nature walk. It’s a quiet Sunday, the neighbors are perhaps at church or having dropped of the kids at grandparents house are out at the mall.
My almost 8 and 4 year old are armed with buckets to save the “treasures’ in. It is serene and relaxing by the lake. Ducks and geese are making haphazard tangents, some novice fishermen trying their luck. Being in touch with nature feels so good.
My kids scan the shrubs and brush looking for treasures.
My son screams with excitement, and he has found a bottle cap. Nothing fancy, just a white plastic bottle cap. My daughter now gets more vigilant.
We see the remains of the “controlled burn” of the brush around the lake. Yes any uncontrolled unhampered growth is a lot of trouble, who knows more than a cancer survivor.
I hear my daughter celebrating a beautiful rock she found. At 4, everything is amazing and full of wonder. Rocks, pebbles, odd shaped stones are all treasures. Blessed is a life that sees stones as valuable and this innocence is so precious.
Before cancer, I may have spent this Sunday obsessing about what to cook, mulling over what summer camps to sign up for and organizing the house but post cancer I am out walking with my kids looking for treasures. I realize that they are learning with me to embrace nature and appreciate life. It makes me smile.
They aren’t at Kumon or at a gymnastics class or learning some craft but they are learning a skill, which we adults sign up for in retreats, letting go and relaxing, finding pleasure in everyday things that are all around us.
My daughter spots a turtle and there is sheer excitement in her voice. It’s a small turtle sitting on a branch sprouting out from the lake.
By now their buckets have an unidentifiable shiny object, a half burnt Sippy cup, a ball and something they are calling a “fishing thingy”.
A mom is pedaling with her son on their bikes. We point out the turtle to them.
She remarks ” Look (son) we are going so fast , we are missing out on all the good stuff!”
I agree. Cancer has slowed me down but the slowing down is not so bad either.
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.
A doctor’s take on the photo of the grieving doctor going viral
The grainy photograph of an ER physician hunched over in grief after losing a 19 year old patient is going viral.
Although some may argue that it is voyeurism of a very private moment of grief, I feel a sense of relief about this opened window. I am a doctor. I understand this precise moment. I know the exact feeling of loss, when the heart rate of the patient starts to drop and despite heroic efforts, life starts to slip out of your sterile, gloved hands. As the beeping monitor records the decline, your own heart sinks gradually with it. Your mind knows but the heart makes you push once more. But its futile and you know what is to follow. You have seen it before, it’s your occupational hazard— dealing with death and accompanying grief.
One would think that being repeatedly exposed to death would make a person more resilient or habituated to such an outcome, but it stabs the heart every time. No death is identical. Each patient has an individual connection with us, humans, dressed up in our white coats. Death is never business as usual.
Yes, we, doctors have feelings too. We try hard to deny it, mask it, shelf it and hide it. But they reside abundantly within us, lurking underneath the cover of “I have everything under control,” “Trust me, I know how to do this,” ” I will be there for you,” “I wish to help you heal.” We fall in love with the new born babies we deliver. We admire the feisty 75 year old widow who is vigilant about her health. We celebrate our patient’s remission from cancer, and we feel pride in our patients’ improved cholesterol. We do it all. Just privately, on our own, most of the time secretly.
We grieve too, we grieve it all. Loss of lives, limbs, functionality, mental sharpness, independence with our patients.
We feel emotionally exhausted at the end of a busy clinic. For, we put our needs aside, block our affect and open ourselves to our patient and give them a piece of ourselves.
We go beyond protocols to add the human touch, we stay a little longer than needed, we hear more than the time allows, we call the pharmacy after hours if needed, we may show up our day off just to make sure things are taken care of, we eat the dry meatloaf from the hospital cafe on Christmas, take a phone call on vacation and sometimes, check our emails when away because we feel…we feel for you and we truly care for you. Sometimes, our ride home is our catharsis where we cry as we leave the hospital, having tucked away all the patients for the day.
We agonize over reports that show worsening of disease. We hate to deliver bad news. We do it, but it punches a hole in our own soul every time. We try not to panic, we are expected to be calm, we are expected to have nerves of steel in crisis, to run the code, to do the emergency tracheostomy, to do that urgent operation. But nervousness and anxiety aren’t unknown to us.
We may not say to you how sad we are when you miscarried, we may not disclose how shaken up we were when you slit your wrist in depression, we may never tell you how afraid we were, when your blood pressure dropped precipitously in the ICU, but we went through those feeling. We felt those jolts of emotions, rising and receding.
But we keep moving swiftly, from one room to another, from one loss seamlessly to another victory while we try and make sense of our feelings. Our training teaches us to modulate our feeling, gradually learning how to deny fatigue and sleep the acknowledgement they deserve, to hide our tears and to tone down our laughter. The bedside manners are considerate combination of empathy, compassion and subdued feelings. Medical training comes with the process of keeping emotions out of the exam room. The notion that we should not let our feeling effect our work comes early. Feelings cause conflict and ambivalence, feelings may make medical care precarious. We are asked to be strong. We prefer not to know what they did, when treating prisoners, for we don’t want negative feelings burrowing in our hearts. We avoid getting too attached to the terminally ill, but fail at it miserably. We try and justify our attachment to patients as if it were illegal, “But she is so sweet.” We suffer for every patient, it just isn’t visible.
You may never know how a small thank you note that you sent made our day after seeing two very young families who have kids with cancer, you may never know how we teared up when you left a handmade afghan for our newborn baby. You may never hear about us saving these notes in our drawers to offer us solace when we confront death or saying a quick prayer for our patients. Many of you characterize us as angels, while we struggle to even be human. Perhaps being an angel gives us freedom to not feel. May be, we are your angels. We try and comfort you. We try to heal you. But inside we are humans, very inadequate, very vulnerable, very much like you.
We beat ourselves up when we make a mistake. We go over it again and again. We stay up at night. Sometimes ,in the middle of the night when we wake up, a patient may pop into our heads, someone gravely ill or immensely kind. We write prescription for a sleep aid for you as we chug down coffee to offset the lack of sleep caused from being on call.
We learn how to separate our life and intra-psychic world from the care of the patient. We, however, aren’t never successful. Put a few doctors in a social setting and the conversation will inevitably transition to patient care. Just ask the spouse or partner of a doctor, how many times they have seen their partner sob for a patient? How many times they have heard “I can’t sleep because Mrs. Brown is in the ICU”? How many times they have had dinner with us while we are preoccupied with a patient issue, how many Friday nights we came late for the party?
The pain and worry that we go through is as real as the compassion for our profession. We aren’t provided counseling for grief for losing patients. We may on occasion wander in the office of the hospital chaplain or find a colleague in the hallway to share this agony, but most of the time the clock keeps ticking and the rooms kept getting filled with the next patient.
We transition from disclosing grim prognosis to revealing a positive pregnancy test. It’s a bipolar range of affect that we navigate every day and day after day. But then, every so often there is a death. The one that is more gut wrenching than the others, that feels like a punch in the stomach and we double over, we may cry loudly just to get it out, because if we keep it in the patient in the next room won’t get what they need – a whole, compassionate nurturing doctor. And we owe it to them.
So we, like my colleague grieving outside the ER, find that moment to let it go, be human for a little while, embrace being vulnerable, and take a deep breath before opening another chart, another life, another kind of emotion.
Why I delayed my ovary removal surgery…….
I was quite confident of my decision. February 23rd 2015, I was scheduled to get my prophylactic oophorectomy ( surgical removal of ovaries to reduce future risk of breast cancer).Everything had been set up. Time off from work, pre-op physical and tests, extra help were all on the calendar.
I had mulled over this procedure in the last few months. I had read about it, heard about it, thought about it . The overarching paradigm: I need to do everything possible to improve my survival rate.
Right from the diagnosis, I had carefully used my medical training and knowledge to fight this dreadful disease. I had read many books, narratives and accounts. I had researched online. I had talked to my medical colleagues . As I received treatment, I was becoming more and more familiar with the disease of breast cancer, its nuances, landscape of treatment and controversies. For me, conquering the disease meant soaking up all I could find about it.
“Know thy enemy!” I said to myself.
Of course , it had its down side too. I would read about metastatic, stage 4 disease which would be scary and stressful. The disability and the vision of death would become overwhelming . But I would confront my fears and cope the best I could. I knew the survival rate of my cancer stage, Stage 3, 70 percent five year survival rate. I also understood that five year survival rate counted those women who still have the disease but remain alive even after five years of being diagnosed. I understood the grey of medical statistics.
I had been waiting for the new data to be presented at the San Antonio Breast Symposium in December 2014. That data which was supposed to be helpful in determining if there is actually increased survival advantage with ovarian suppression( suppressing their function that is).
Breast cancer and ovaries are an intimately connected topic. Breast cancers are classified according to the type of receptors that the breast cancer cells carry.
The kind of breast cancer I have is called “ER and PR positive”(ER stands for estrogen receptors, PR for progesterone receptors). This means that the cells, the cancer cells, have receptors to which female hormones, Estrogen and Progesterone will attach. Ovaries produce these hormones. Simple way to understand, the more the hormones, the more the risk that they will make the cancer cell proliferate.
Granted the assumption is that chemotherapy and radiation , after surgery, would have destroyed all the cancer cells which is what would “disease remission” be, but when it comes to a diseases like cancer, it requires every possible intervention and the end goal is always improved survival.
I had read the paper carefully, looked at the numbers and utilized my medical knowledge of statistics to come to terms with my decision. But I am not an oncologist. The subtleties of oncology is still something I don’t quite get in detail. The data from the trial hinted towards suppression of ovaries as a way of reducing that chance, slim but nonetheless a chance.
Sad truth of the life of survivor, coming to terms with odds, probability and the chance.
So I checked into the cancer center and waited to be called in for my appointment with my oncologist.. This was the first time I was meeting her since the data was presented. I was expecting this appointment to be clear and precise where she would celebrate my decision and I will go get the surgery done and move on.
The appointment didn’t go as I had expected it to.
My oncologist is a compassionate doctor. She is immensely likeable and human unlike the stereotyped detached oncologist. We talk about handbags and shopping and socks, woolen socks as she proficiently examines me every time, with sure hands and glowing confidence. She has a cheerful demeanor, and an optimistic disposition both highly desirable for a medical oncologist and she is a woman. I had read this study about how female physicians on average spend more time with their patients than male physicians do.
She is warm and engaging but never tells me what to do. Sometimes it gets annoying when it comes to sorting things that I don’t understand fully. I am not sure if she opts for this approach because I am also physician or this is her general style. Perhaps I get a nice blend of both.
She had been aware that I had scheduled the surgery. She opened the conversation by this very direct statement,” I don’t think you should do the surgery”.
I was taken aback. I muttered, ‘But didn’t the data suggest that getting the ovaries out improves survival?’ I asked.
What following was a conversation that left me befuddled and unsettled.
In my mind, getting the ovaries out was the clear way of improving survival. She however started talking about quality of life.
A lot of medical conversations, especially in the lives of those afflicted with cancer , rotate around the phrase, “quality of life”.” quality of life” that we seldom think about when we are healthy. Quality of life that becomes so relevant in terminal illness scenario. Quality of life which should be the essence and focus of all alive.
” Do you realize what abrupt menopause will do to you at your young age?”.
But I want to live long, my mind replied.
“Have you thought about the potential effects menopause on the quality of your life?”
No, I hadn’t. Once you have cancer, you get so obsessed with preserving life and staying alive that you transiently stop considering the quality of days you have.
The warrior terminology makes you want to defeat it at any cost.
Is all cost worth paying? I have already done aggressive treatments, mastectomy, harrowing cycles of chemotherapy and radiation that left my skin peeling. Isn’t that enough? In my quest for increased survival and conquering cancer, what I had left on the curbside is considering about all the things that really matter to me.
She then rattled off a list of all the things that could go wrong. “You feel well right now, you are recovering but after the surgery you can gain weight, your cardiac risk increases, you can have hot flashes, depression and other things your husband won’t be happy about”.
I have stayed fit and within normal weight all my life. The idea of acquiring pounds in exchanged for longevity didn’t seem fair. The image of myself obese with a weak heart and depression shook me up.
As she was talking, my mind was processing the phrase ” quality of life”. What do I want? More days? or more quality? Why do I have to make that choice to begin with……
Would I be fit and happy like I am now or trade in all of that for a minuscule increase in survival.
I asked her if she could give me a percentage increase in survival if I did the surgery and she said she couldn’t. So should I knowingly give up my ovaries with a great likelihood of suffering in exchange for an undetermined chance of reduction in recurrence ?
If I don’t get my ovaries out and experience a recurrence, would I blame myself for not doing everything I possibly could have? Would I feel guilty about it as I would say bye to my kids and family.
My mind was working, in all angles and in all directions.
Untimely menopause, another surgery, quality of life, cancer.
If I had the genetic mutation of BRCA 1 or 2, the decision would be easy. There is a 50% reduction in cancer risk after ovary removal in high risk women with BRCA mutation. I did not have that.
Chemotherapy shocks the ovaries, they are stunned. No one knows if they will “wake up” and start producing estrogen and progesterone that my breast cancer cells have receptors for. Or they have completely quit working for good.
Circulating levels of estrogen and progesterone will “feed” the cancer cells. My lab tests tell me I do have enough of the hormones in my body. But oncologist considers this unreliable to decide if I am in menopause or not. Never mind that I have not menstruated in the last 18 months. Still medical doctors cannot confirm if I am indeed in menopause or not.
I want to scream, I am not a lab rat, I am a person, a whole person. I question, how much do I have to give up to stay alive?. I am taking Tamoxifen , the medicine which prevents estrogen from binding to my cells. That is a lot of treatment right there. My aunt with breast cancer took that medicine for 5 years, she is here 30 years later, cancer free.
I have just started to return to some normalcy where I can get through a day without taking a nap. I have even started to flirt with the idea of regular exercise. Can I afford mentally, another disruption, another recovery, another pause? My kids are seeing me recover and be a mother again. I am reconnecting with my life.
Do I opt for that marginally increase in survival and risk a lot elsewhere? I thought and thought.
” You could do medical suppression as well, we will give you an injection every months until we are sure you are in menopause”.
The effects of suppression of ovaries with the injection would be identical to surgical removal , the only caveat, ovaries once removed cannot be put back in while I can refuse the shots should I be really miserable with the menopause symptoms.
I suddenly felt that enough is enough. I had walked in here with a date for the surgery but here I am thinking about this from an entirely different perspective.
I told the doctor. “I am taking this year off. No surgeries, no shots.”
I want to live this year recovering. I want to be strong and healthy , as much as my body will allow. I want quality of life. A year of peace and recovery. I will table this decision for next year. A year , I know, is an arbitrary time line. But it means at least one birthday, one anniversary and one birthday for each my kids and husband. It means one Christmas and new year where I am not dealing with severe direct effects of cancer treatment.
I am taking Tamoxifen and I will hope for the best. So for now , just let me live my life.
The chances that I will be happy are 100% because I feel that it’s the right decision for me for now. The other odds and statistics, I will review after a year.
(Here is the link to the post I wrote about the plan to get the ovaries out earlier http://ppg.xwc.mybluehost.me/website_445c9d4e/2014/12/17/why-i-am-planning-to-get-my-ovaries-out/)