Scheherazade Meets The Phantom Of The Opera
It used to be the case that there is hardly an occupation that enjoyed more unquestioned respect, and even, obedience, from their “customers” than that of a physician. Yet, in this day and age of Google searches and social media networks that enable committed lay people to gather information and share experience, no profession is bullet proof from “empowered” customers’ zealous self advocacy. Indeed, among some patients with serious medical conditions, it has gotten quite fashionable to become skeptical, and even rather belligerent when it comes to dealing with their doctors. Among those prone to conspiracy theories, it is all the rage to blame physicians to be part of the pharmacology industry’s perfidy to “hide” the cure for cancer and other major killer diseases to protect their revenue stream. More benign criticisms about doctors abound — such as being arrogant, authoritarian, dogmatic, inflexible, and closed minded to all sorts of alternative therapy modalities. Various celebrity patients made a tidy sum capitalizing on these sentiments. Even some physician-turned-patient- advocates further promulgate such views. There is a subtle and not so subtle undertone encouraging hypervigilance and an aggressive stance to challenge the physicians to go an extra mile for them — the underlying assumption is, unless thus demanded, it will not be given willingly.
I, too, firmly believe in empowered patient’s self advocacy. In fact, I am convinced it’s a key survival factor, and in an ideal statistical forecasting model for survival odds, it has to be prominently featured as one of the critically important prognostic tools. However, my approach is entirely different from the fashionable version of hyper aggressive self advocacy. I never believed in a “stick” approach of things. I did not believe in it when I was managing a large organization. I did not believe in it when I was raising my two kids. I choose to give a benefit of doubt when it comes to human nature. I believe that a physician who was academically and intellectually capable of thriving in various other professions as a young man or woman chose to go into medicine because they had an inherent desire to do good and help patients. Over the years, as in any other profession, for some physicians that initial idealism may have faded a bit, having lost the enthusiastic edge of a 22 year old entering medical school yearning to be another Hippocrates. My goal, then, is to find a way to rekindle it, at least when they are dealing with me. I want them to pause for a few extra minutes to think out of the box, stretch the envelope, read my charts one more time to see a hidden pattern, and do extra research to find the latest potential therapeutic regimen. In short, I want to be special to them: a patient for whom they naturally end up spending more time and energy for not because they were hounded to do so but because they wanted to.
How do I do that? My cancer is the entirety of the medical university “for me”. However, this is just one of the hundreds of cases they deal with. Nothing special, and nothing unusual. Nothing that should demand any extra energy and attention. In fact, it’s a mundane routine for them — day in day out. At the risk of sounding self important, I would say that from the beginning, I probably stood out in that I was very well informed about my condition, having done a lot of research in the field. By now, I know enough that I disagreed with the latest protocol Dr. Sabbatini was offering and had him change the protocol according to my suggestion. However, it’s one thing to be a nosy and know-it-all patient, and it’s entirely another to be the patient that my doctor would genuinely care about, giving me way more than my share of his precious time and energy. I found a way. I found a way to warm my way into my doctor’s heart and emotion, become that special patient he pays extra attention to. I decided to suck him into my psychodrama. I decided to make him one of the principal players of this unfolding saga.
Several months ago, I shared with Dr. Sabbatini deeply personal essays that I started to write ever since this journey began. When I gave him my first essay, I told him “Now, I am your Scheherazade of the Arabian Nights. If you want to read another story, you will have to keep me alive till next time.” The effect was immediate. He sent me a moving response via email. A major victory. MSKCC doctors and nurses do not give direct email addresses to the patients. Everything has to go through the admin. Understandable. If all the hypochondriacs send emails to their doctors day and night and demand a response, the doctors won’t have time left to do their work. The direct avenue of communication raised the collaboration between us to a new level. The benefit of such dynamics was never more evident than during last two and half months.
Lately, it has not been easy, both emotionally and physically — perhaps the most challenging since I embarked on this journey as an unwilling star of a macabre play. For several months, I am having an ongoing bowel problems due to the soft tissue metastasis of cancer cells over my bowels. There are days I can hardly drink, let alone eat. By now, when I look at food, it looks more like an enemy for the pain it can cause me than a life sustaining substance. My bowels are so inflamed and swollen, when it is bad, I look as if I were seven months pregnant. The cramps are at times bad enough to need heavy duty pain killers — and I have a very high pain threshold. I had to be hospitalized for several days when my bowels needed a complete rest. To add insult to injury, at the hospital, I was stood up by a dog — they have this program of “healing” dogs visiting patients for mini psych uplift. The dog was a no show. How much lower can I sink?
Then I got the news that a woman who I got to know and became rather close to passed away. She and I had an identical diagnosis and the same intensely intellectual way of managing the cancer. Given how similar our trajectories have been, it was very hard news to swallow — I was about six month behind her in diagnosis, and she and I both had very short remission from the initial treatment, and then on-going treatment for cancer that wouldn’t go into remission. I was deeply impacted by her passing because I genuinely got to like her, but the disturbing similarities between the two of us were an added source of fear and anxiety. Am I next? Of course, the rational me tells me that we are all different…. Yet, I cannot escape from the fact that during last 20 months, I have been watching too many people I got to know pass away — this is the kind of experience I am still not used to.
Furthermore, the latest treatment I was very hopeful about turned out to be a failure. At this rate, I am going through treatment options as Donald Trump goes through twenty something wives. Except, he has an unlimited supply of these pretty young things, but there are only finite chemo drugs I can go through before I am declared more or less hopeless. For the first time in my life, I am beginning to understand the real meaning of the concept of “learned helplessness”. It’s a sociological/psychological framework that explains why some individuals gradually learn not to even try to improve whatever predicament s/he is in. After so many attempts fail, one loses the faith in his ability to have an impact, and learns to simply give up. No, I am nowhere near giving up: I don’t think I will ever just give up. But I can understand why some people do. It is painful to have such hopes, only to discover that they again failed you. For me, the failure of the latest protocol is much more than just an abstract concept with its origin in sociology and psychology. It involved two of the three drugs that successfully put me in remission after the front line treatment, short as it was. It was the treatment that managed to wipe out a lime sized tumor left behind when they operated on me. It is alarming that the treatment that worked so well is no longer working.
The weight of all these events culminated to create a mini crisis one evening — a perfect storm of a sort. That was the day after I was discharged from the hospital when I had severe bowel problems. Dr. Sabbatini and I decided to give the latest treatment just a little more time: another weekly infusion to see if it kicks in. The treatment started late in the afternoon. It did not start well. It took well over an hour to find a usable vein. Prolonged chemo treatment leaves veins inaccessible. Last several months, every time they needed to draw blood or insert an IV for a treatment, the experience became rather traumatic both for me and the nurses. It takes multiple pokes, and by the time they find a vein, both of my hands and arms are covered with puncture holes and bruises. This particular evening was nerve wrecking even by this standard. The nurse told me “if this last poke does not work, we will have to send you home without a treatment, and try again tomorrow”. Luckily, the last poke worked. Later, the head nurse came out, and told me that she just emailed Dr. Sabbatini informing him that I would need a chemo port as it has become practically impossible for them to use the veins in the hands and arms. For those of you not familiar with various kinds of cancer lore, it’s a port they insert on your chest directly connected to a major vein close to the heart: this way, they don’t have to ”find” a usable vein. I am not a chemo port virgin. I had one before for my initial treatment last year, and I tried to avoid getting another chemo port since I had such a bad experience last time. It took forever to heal, was always uncomfortable, and in the end, got infected and had to be taken out. I guess now I have reached a point where I could no longer avoid the obvious.
As I was leaving the clinic after the infusion was over, I had a very bad fall and ended up scratching a large area of my face. As part of the infusion, they gave me Benadryl, which usually leaves me a bit disoriented and unbalanced. Normally, I can handle this with a little bit of extra rest in the waiting area. However, that evening, I was weakened by 5–6 days or hardly eating anything, and the cumulative effect of the bowel problems combined with all the minor mishaps. I lost my balance, tripped over, and fell. Turns out, it’s the MSKCC protocol that if a patient has an accident at the outpatient clinic, she has to be sent to their main hospital for evaluation. So, off I went back to the hospital I was discharged from only a day before. Then, there, waiting in the emergency room, I wept. It was the first time I cried in public space.
I wept for my friend who passed away a few days ago.
I wept for my lost dreams.
I wept for all the things I can no longer take for granted.
I wept for the loss of confidence with which I used to use the word “when”. Now, it seems more of my “when’s” may have to be replaced by “if’s”.
More than anything else, I wept for my husband. He has been dealing with serious medical issues of his own last couple of years, and lately, it has gotten far more ominous. When I called him to let him know what happened, and added that I was in an emergency room, but everything would be all right and he did not need to come, he said quietly “Dear, even if I wanted to come, I couldn’t. I simply can’t” It pained me to imagine how he must have felt when he was faced with the situation that I was in, and couldn’t come to my aid. So, I wept for his despair and helplessness.
A nurse came to me. She wrapped her arm around my shoulder, and simply sat there with me. I was moved by such a simple, but profoundly compassionate gesture. By the time they were done with me around midnight, the left side of my face was covered in white bandage. As I was leaving, with eyes swollen from crying, I turned around, and asked the night nurses “Do you think I can now audition for the role of Phantom (of the Opera)?” They burst out in laughter. I would like to believe that that was the best black humor of the day at the emergency center. I have always been an optimizer. I wouldn’t ever waste a minor disaster without making the most out of it. So, there, at that miserable night at an emergency room — the worst night since I became the cancer patient — my inner Scheherazade became the Phantom of the Opera!
In the midst of all this, I have felt tremendously grateful for the kind of care and kindness my medical staff bestowed upon me. I always felt that one has to earn people’s good will and kindness every single step of the way. On a mile long list of my character flaws, the sin of taking other people’s good will for granted has never been there. I try to be a lovable patient. For patients, it is easy to feel that our suffering gives us a right to demand compassion from those around us. But, should it be always so? It cannot be easy for these people to deal with patients with serious ailment day in and day out. I remember when I was initially given the likely news of advanced stage cancer by my primary care physician based on the scan results. She asked me if I would need some kind of sedative. I said “No. But, how are YOU feeling? It cannot be easy to be the one to give this kind of news to patients you have gotten to know and cared over the years.” She looked at me and quietly said “you are the first patient who asked that question.” Compassion is a two way street. I want to appeal to their kindness and compassion by being compassionate toward their angst.
It is gratifying to know that though my cancer may not respond to the treatments, all the people around me are rewarding me amply for my desire to bring out the best in each one of them. The nurses at MSKCC hospital did their best to give me the “single room” experience by not sending a new patient to the empty bed next to me. Dr. Sabbatini and his team showed up in my hospital room even though it was not required for non-emergency cases, as I was being seen by physicians at the inpatient center anyway. When I sent email to Dr. Sabbatini at 1 AM that I would like to change the protocol, he responded around 7 AM saying he would set things in motion. This new protocol required a very elaborate pre-administration of several other drugs for controlling allergic reaction. By 9AM, his office completely reworked the day’s schedule to accommodate my wish. It was not an emergency situation, but they responded as if it were one with a rapid response plan. I do not know whether they always operate this way, but something tells me that they have been exceptionally accommodating of my wish. I am profoundly grateful. So, to the degree that this is a result of mutually satisfying relationship I have built with my medical staff, I would like to believe that I still have an ample control over the events that affect me; learned helpless or not. In fact, the best antidote to learned helplessness is to keep searching for things one can still have control over, and this is precisely what I am doing. If I can’t dictate to my cancer how it should behave, at least I can influence the way all those around me rally around me as my allies.
It’s been close to two weeks since my new treatment started. I don’t know if this treatment is going to work or not. I will remain hopeful until I have a reason to believe it is not working. This new treatment packs in some serious punches: for a couple of weeks after the infusion, it leaves me much more tired than I have ever been. However, I am still extraordinarily lucky in that I have no other side effects such as severe nausea and vomiting. Given how long I have been at it, it’s a minor miracle how well my body is holding up. And, there are more minor victories. My husband condition is stabilizing a bit. Our feeling for each other is stronger than ever. I continue to have bowel problems here and there. I am still having days when I am too afraid to eat. However, there have not been intense flare ups that used to debilitate me. A new chemo port has been inserted and the incision is healing very nicely. My face is completely healed without a scar — a major victory as I have always taken an immense pride in my skin that let me pass myself off as someone 10–15 years younger than my age. It’s good to have the mask off. Given a choice, I would rather be Scheherazade than the Phantom.
Just as Scheherazade did not know whether she would live another day to tell her story, I do not know how my own story is going to unfold. What I hope is, there will be a time some months, hopefully, years, down the road when I can look back at this period and say “that was a tough year, and we somehow survived”. And, I hope there will be countless thanksgiving dinners at which my children and their families will roll their eyes over for the same tasteless and inappropriate jokes about this period over and over again — about the Phantom, about the singing and gurgling bowels, about the arms and hands of a drug junkie covered with needle puncture hole and bruises….. It will be worse than a Hasidic Passover meal preceded by hours of reading Haggadah. They will be chained to the chair and forced to hear the same lame jokes hours before they are allowed to eat! Like I said, I am an optimizer — I would never waste a misery without squeezing a maximum excuse to inflict pain on others!
While I am fantasizing such a delicious eventuality, I am dealing with my angst by reminding myself whatever it is that pains me presently, this too shall pass! In the midst of all this, I am acutely aware how blessed I am in so many ways in spite of everything that has happened last twenty months. Our younger son is with us now, just back from a 100% government sponsored cultural exchange program in Cambodia that even paid him for time spent. The older one will join us in a few days. These are our treasures — young men any parents would be proud of. How can we pity ourselves when we see the world through their eyes, their excitement, and their hopes! Part of being a winner is not to let your universe be defined by the bumps on the road. When cancer diminishes my world view as that of a victim, it wins. I do not intend to be a loser. After all, not only did Scheherazade cheat death, she did live happily ever after, didn’t she?