Recollections

Day 0: Unexpected Ways to Celebrate Rebirth

Neets Graduated Med School Woo
Sharp as sharp can be and donning that Doctorate degree. Nitin (right) will be a (Dr.) soon too!

There was only one stipulation – a point of no-contention – by which the pertinacious reed of my will would give itself over to the annals of science: The transplant would have to wait until my sister graduated Medical School. I had been vigilant by the sloping banks of an erratic on-demand schedule and grit my teeth when I had to make accommodations. I always tried to apple-polish my way to May 12th to remind my transplant team that they had indeed, at one point, agreed and therefore, there was no going back on their word. For a few tumultuous days, doubt crept into family discussions, poisoning the waters of firm will and resolution. As the initial conflagration gave way to embers, we had all transformed into hirelings, eager for the fruits of our labor to manifest in wage, recycling days and incapable of separating one from the other. Soon, a few weeks before the appointed date, like all events in the family of import, the thrall of fervor had ignited our passions with a bright flame. We marched towards the dying sun eager to see family and friends in the glorious sun-bleached land of Las Vegas.

Woo yea
Graduated Med School Yea!

This story had to begin here because we had not realized it until her name was called on stage: in front of us, a new creature shook off the ashes of her old life and was reborn as  a sibylline baby bird, which revealed in oracles, the birth of itself. The phoenix was no mirage and no simulacrum: it was what she had always promised she was and was going to be.

Congratulations Dr. Neethi Dasu
Dr. Neethi Dasu

Somewhere along the line, in uncountable days, perhaps watching too closely or not watching at all, we had failed to replace the image of the little girl of many years hence. Fiesty, vivacious, and ever attracted to the sun, as if she was its only parhelion, we had taken for granted the transformative power of fiery testing crucibles. Somewhere along the line she had gone to war against herself and she had come back with the Gorgon’s head emblazoned on her chest as aegis. So as she was enrobed with a title of honor, a title that meant something, we could no longer ignore the baby phoenix. With misty eyes and heartfelt “started from the bottom…now we here!” chants, I could feel a recognizable pride well up within me. After all, wasn’t I the one who had been closest to her and had been there to see most of what my family had not seen? And yet, this unveiling was as new to me as it was to everyone else.

That Vegas Sun
Take 1: That Sun that Bleaches all Bones. Well we tried. Selfie 0 – 1 Vegas Sun

 

In the Car Vegas 2017 Neets Graduation
At least it’s cool enough in here to take a pic.

This Scylla violently lashed out against me. I remember being trampled underfoot by its overwhelming grip, until I realized that just as the phoenix is born through the sum of many pointless, irrelevant, mostly forgotten days as tiresome and testy as they were, we were not getting through the short 3-day weekend without a great push of perseverance. It was no easy task managing family and friends, especially when they were both on opposite sides of Vegas. The zephyr’s that came down from an always forgiving sky, perhaps in acknowledgement of the baby phoenix parhelion who was driving us around at pace here and there, gifted balls of energy that we did not have. Perhaps in recognition of an ashy rebirth, the sun forgave our sins in the desert and we somehow made it to the airport just barely, on time.

Nitin and I in Vegas Waiting for Neets to get her Hair Done
Hello Vegas! My cousin Nitin and I wait for Neet’s to get her hair done before Graduation.

I remember passing out without packing for the 6 am flight the next day: there is no Scylla without Charybdis. The great maelstrom heaves and puffs like a creature of torment, blasting from its whirling nostrils molten snot that singes the water and burns black bellowing wisps into the sky of perdition. All that lies ahead is uncertainty. All that lies before it is doom. In truth, for anyone who has been stuck between the devil and the deep blue sea, there is no lesser of two evils. Like a venomous, uncontrollable ritual, we are channeled by the overwhelming peristalsis, all in single file, through the hell-mouth of choice and imperceptible logic. Moving steadily from one point to the next, as much as we like to believe that choice dictates, the consumed eke through the bowels of a greater salvation, consuming to be consumed.

Headache but, Let's Pose for a pic
Headache but let’s pose for a pic! Gosh I look tragic!

Max Weber believed that tall-poppy syndrome was a zero-sum game. Let me be the first to say, I don’t care, because the frailty of the human form is not limited to its biology. Somewhere along the line, the great terrors that manifest in my head as mythical creatures dissolved in the rhythm of perpetual motion. One step in front of the other, whether on Pelotons or $10/month gym-membership stationary bikes, we are moving forward, a la Red Queen, because that’s all we can do. I am more than willing to give up my share of prestige to save the neck of a high achiever who truly deserves it. I don’t think it’s my humility, but instead, my needless commitment to logic that brings me to this conclusion. After all, how can I not look at Scylla behind me enslaved by the immortal will of the fire princess, the absurd hero that refuses the rock of her imprisonment and continually overcomes her fate by giving in to it, and not be awed? German Satirist Dieter Nuhr astutely recognized the fallacy of humanity: most of what we believe to be acceptable behavior is nothing but a social construct. Social constructs, like the word implies, are imaginary and so as the days passed by leading up to today, all I could think was: “Where is Charybdis?” and “What happened to Scylla?” It is the frailty of the mind that prints recognizable images upon the interpretations of the stress its biology must endure. For better or worse, whilst everything was happening, it seemed liked nothing at all was happening until I ended up in the ICU the day before my transplant.

Chai Amar Neets Varun Dad - Copy
The ICU, with friends.

I have to give a special thank you to Varun, Chai, Amar, Neets, and my parents who helped me make it out of the ICU as I suffered through serial migraines. The headaches were bad enough that I resolved to crawl through them on my hands and knees, if my Dad’s head massages did not work. The one thing I remember yelling at the void was: “Don’t you take my mind from me, cursed Charybdis! Take anything else but the vehicle of my being!” Perhaps this is why Odysseus found Scylla the lesser of the two beasts. The headaches were debilitating and they shut me out of the greater world. I was not able to work. I was not able to think. I was not able to write.

Receiving some OMM treatment
Maybe some OMM will help the headaches?

After some revitalization, I normally sprang back up to my usual self unlike what most of these pictures portray. It always perks me up to indulge in philosophical banter, and I was blessed to experience the terrain before me without angst or concern for the big day that loomed, mired in uncertainty more than surety. I am eternally grateful to Chai and Varun for their help and assistance in moving me back from the ICU to my own room.

And…Voila!

Missed the Transplant Mostly Sidelined with a Headache
The peristalsis of life: juxtaposing the present and the future in one image.

I don’t think I even saw the cells in the bags that were being transfused. I heard the fuss around me as pangs of pain shot through my head: “It’s so clear! We can’t even see them!” Indeed it was a sight to behold. Both my veteran transplant nurses Ufouma and Rahel (seen above) had never seen such a clear bag of modified stem cells. This story is worth telling so I will segway for a quick minute.

My Ball and Chain
Oh sweet ball and chain, how like medusa you grow and shrink everyday!

During the transplant build-up phase, I became the first patient on the protocol to try a new drug that released the stem-cells into the bloodstream so that they could be collected via apheresis. The significance of this revelation meant widespread changes in the protocol such that all the transplant patients after me (I’m sorry!) had to wait a few more months for the protocol to be amended to include this wondrous contribution to their quality of life (You’re welcome!). On average, bone-marrow harvests yield 3-6 million cells (Forgive me if the numbers aren’t exact, I’d appreciate any and all fact-checking as long as it’s correct!). The first time they used the drug to collect them via apheresis, my yield was 11 million. Not only did they receive more than enough, but the number of viral copies for transplant ended up being ~5+. On all the protocols including the original French clinical trial, this was the first time they received such astounding numbers on both fronts. This high yield is quite possibly the reason for the clarity of the cells (most other cells with lower yields tend to be yellowish in color). But the reason why I pushed fervently to get this format of stem-cell collection included on the protocol was because: no more painful, nasty, horrible, bone-drilling stem-cell harvests! Not only is the yield higher, but you also don’t have to deal with the pain? “Sign me up!” is what I hoped the future transplant patients would say! I was immensely annoyed when they told me that I had to wait a few months till the protocol was amended to include this test drug, but after going through all the bone marrow harvests/biopsies AND going through the apheresis harvest, I’m happy I waited!

Mom Rubbing My Head - Crazy Cluster Headache
Mother tending to my head as I (still) miss the transplant.

I remember thinking to myself: “Isn’t it ironic?” First I get caught up in a fainting spell which leads to a code being called on me. Then I awake in an ICU and have a great time relaxing the day before my transplant. On the day of my transplant, I’m fully functional and immersed in conversation and the generosity of friends who traveled all the way from NYC to see me. Then, when the big moment arrives, I am sidelined once again by a headache so annoying that I only squint at the goings-on around me and do not even get to see the cells that would ignite a rebirth within me. Just as the small bags quickly infuse into me through gravity’s pull alone, the headache begins to slowly fade and I feel the cells overwhelm my bones as they rush into my sternum and ribs. At first the feeling is warm but quickly turns into unease. I think to myself: “Oh God I’m going to die! It’s too fast! It’s too much!” The swarming cells make me feel like I can’t breathe and I’m afraid to complain to my nurses but I let them know anyway. They slow the infusion down with the second bag and I feel much better.

Transplant Day Hanging with Ufouma Rahel, Varun Chai Amar Neets and Mom and Dad
That’s it? I thought there was more to it…

They had warned us that the transplant was no grand event. It was fairly innocuous and not worthy of much fanfare. We had not planned anything and honestly, the day was only made quite special because of Varun, Chai, Amar, Neethi, Mom, and Dad. I did not expect anyone to be there, but I am, from the bottom of my heart, truly grateful for everyone who was there with me on transplant day.

Healthy Red Blood Cell, Mom, Dad, Neets, and Me
Family Pic Post-Transplant Celebrating the Reborn Red Blood Cell who will be Sickled no more! ¡Viva la Revolución!

Thank you for the very cute Whole Red Blood Cell. It is indeed a very apt avatar of the reborn me! I couldn’t feel anything but happiness. I was glad to get it over and done with not because I was waiting eagerly in anticipation while counting down the days, but because my parents were waiting eagerly in anticipation as they counted down the days. I was happy that it was low-key because that’s how I am. It reflected my character more than I could reproduce for you here, in images and words. As a lonely solipsist, I was happy to, finally, see the weight fall off my parents’ minds. It had harangued and plagued them for so long that I felt happy for them more than I did for myself. Perhaps somewhere in that reflection is the seed of the new rebirth just as all those multicolored days led to my sister becoming a doctor. The colors of the day were pastels, but in memories and recollections now, they appear to me in a roseate light.

In all honesty, the only colors that mattered that day were the colors of FERRERO ROCHER!

Ferrero Chocolates to Celebrate a Succesful Transplant - Copy
A Toast!

Just as I thought that there was no other way to celebrate a new birthday, except through card games, word games, and lots and lots of chocolates, the nurses of the transplant wing, with Ufouma as vanguard, sing me happy birthday, present me with a rich chocolate cake and insist that I celebrate two birthdays a year!

Awesome Transplant Day Surprise Birthday Cake
What a sweet gesture! Pun intended!

I am presented with gifts and I am presented with indescribable emotions. Many, many thanks (again) to Amar, my sister Neethi, Varun, and Chai who went over and beyond my limited imagination and ignited a joy I did not expect to feel – for myself. Somehow through all of their generosity, I found myself happy to be, a la Descartes. Somewhere along the line, all the confusion evaporated and revealed the clarity beneath. For someone who had been toiling with the quandaries of the mind, the iniquities of the soul, the trepidation’s of humanity, the ages of decay, and the cycles of white-washed days, I was jump-started and finally awakened, slowly, to a new waking life.

 

Transplant Day Gifts! Healthy Red Blood Cell and an Amazing Book
Gifts too? You were all too kind!

I am not one who invests much stock in surprises, but on this day, it was the unusual mix of unexpected events that truly elevated my spirit. There could not have been a more joyous occasion. In the unexpected, I found a reason to smile.

I am beside myself in awe of the many ways I got to celebrate a day I thought would be lost in uniformity.

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Recollections

Day -1: The Familiar Scenery of Ethereal Projection

I had a wonderful and much-needed excursion away from my room. For many many days, the one major recommendation from all the nurses, spiritual guides, and assorted friends (calling them staff would be sad) was: “Get up and out and about!” I wholeheartedly embraced this sentiment with gusto and a reverence for a truth that revealed itself to them through experience.

Where they house the Phototoxics
Where they keep the Phototoxics (jk)…and my sister.

We found some marvelous places around the NIH: ornate alleyways leading to glass-walled enclosures that reminded me of carefully gardened British properties; a multi-purpose court for Basketball (with hoops!) and Tennis; intriguing Lipsett Amphitheater displays; and many, many opened doors down abandoned pathways. It was as if the sages were right: all that was before us, was ours (not to mention when it’s that time of day when it feels like there is no one around anywhere). In the beginning I was caught by an eerie primordial feeling. I joked with my sister as if to willfully stymie the thought that the herds have disappeared and that there was probably a very good reason. Somewhere out in the fields, danger was looming, but we traipsed along pleasantly amused that there was almost no door that was locked and even though I felt a growing fatigue, I filed the warning away under the folder that I refuse to open until it opens itself: “Chemo.”

In “The Pyramid at the End of the World,” The Doctor puts it quite aptly:

The end of your life is already begun. There is a last place you will ever go, a last door you will ever walk through, a last sight you will ever see. And every step you ever take is moving you closer. The end of the world is a billion, billion tiny moments. And somewhere, unnoticed, in silence or in darkness, it has already begun.

I joked with my sister about the fact that before I knew about the fact that the cardinal directions at the NIH broke down further into sub-cardinal directions, I confidently walked into a door without looking at the signs, and found myself in an ICU. The joke was, save for that one funny experience, I’ve never ever entered an ICU in such a pleasant manner: on my own two feet, listening to my tunes. Somewhere, unnoticed, in the quiet halls and empty glass structures, it had already begun. I had been struggling with the fact that I had overestimated my energy level and perhaps should have considered opening the folder called “Chemo” in my head. At least then I would have considered the warning. The fact that it was hot and heavy outside did not help since both of them (Temperature and Air Pressure) are triggers for a syncope-like state which I fondly call “Ethereal Projection.” As I struggled to find a cool place inside and rest, I was breathing heavy and perspiring a great deal. We tried to hurry back to the unit, but near some abandoned elevator, the air was even more stifling and the lack of oxygen quickly wore me down to the ground. There I lay, gasping for the cool kiss of air close to the surface of the earth as my sister frantically began to panic. She started to look around and saw a wheelchair just a few yards from where I was certainly, quite a sight to behold I’m sure. I returned to the same place I’d always gone when such an event had occurred: the familiar scenery of a world that I simply could not interact with. As my sister tried to converse with me, I remember saying words that I simply did not say: “Just leave me here for a bit. I’ll be okay.” She was worried that people walking by would surely not allow me to stay passed-out on the floor, and I couldn’t awaken to calm her down and alleviate her fears, because, as The Doctor said, a careful sequence of events had already been set into motion and gone completely unnoticed. Somehow, right there in that location where she found a miraculous God-sent wheelchair, along comes a stranger much to my chagrin. I hear footsteps approach and all the pleading while in my highly conversational non-conversation with my environment, does not stop his advance. He calls to me by my name and says: “It’s me. Primary Investigator, Dr. Tisdale.”

I’d like to pause here and give a small shout-out to oracular hallucinations, the red string of fate, the world of the here and the world of the there, the sun that separates the hell in here from the hell out there, and the dementia of the me in conversation with myself. I did promise harmonic oscillation, and I’m astounded just how incredibly well, the sequence of events as outlined in poetry and prose through these entries, managed to keep that promise. It was as if I was foretelling my own story, and as I yelled at people in my head to leave me alone and stop stabbing my sternum endlessly, I was ushered back into the ICU, trapped once again in the familiar scenery of ethereal projection.

The hard work of getting me to an acceptable condition was handled by a mass of nameless voices and Gloria, my ICU nurse. When I awoke later near the end of her shift, I was happy to tell her about CENTRAL. One of Peru’s premier foodie destinations featured on Chef’s Table. That night, before my transplant, I had the pleasure of chillin’ with #bestnurseever. This picture was only taken under the assumption that I address her by this title, so shout out to Marjorie!

Marjorie
Marjorie aka #bestnurseever

So it is indeed true that I had a much-needed and wonderful excursion from my room. I just want to add that it was to the ICU. The restorative power of Marjorie’s (and Gloria’s) intriguing conversations was exactly what I needed to break free from the voice in my head. I found myself on the brink of Day 0, free from shackles that I never even knew I had. Oh how ironically I must’ve laughed at myself from the familiar scenery of ethereal projection! At least, this time, in this ICU, I was not intubated for no reason at all.

Recollections

Day -3: An Affair with Honesty

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It is no secret now I’m sure, after the last few posts, that I revel in the pompous pea-cocking denotive of one who enjoys taking veiled moon-shots. After trying to describe the difference between the true weight of important matters of the mind to my sister who sits but a foot away from me as she works on the aesthetics of the blog,  she brings me to the realization that the quandary I face is not one of existentialism. In response, I offered, as I had initially suggested I would, a straight-laced account of the day-to-day account of Patient X. There have been many requests that have simply not been addressed thanks to the format and the style in which, as my Mother termed it, convolution replaced clarity here. So I decided to change the rule book and finally have an affair with honesty.

In my mind this tale was not worth telling, which is why I strayed down the strange broken-buttress filled pathways seldom few recognized and even fewer understood. But after seeing and hearing the overwhelming responses from hearts that I simply cannot ignore anymore, I will begin the tale exactly where it was supposed to have begun for me: in my mother’s womb. I jest. It was actually the red string of fate that brought me a small dual-toned pamphlet that simmered for a few days untouched by my bedside on squeaking clock-like reminders from my mother. “Did you see the pamphlet?” She repeated, usually annoyed that I still had not even touched it. What could it possibly offer me that I could not easily pass off as useless? Would it not have been a pointless investment of time, to consider yet another clinical trial or treatment option?

When I recounted this story to my nurse in the wee hours of the morning, it appeared quite funny to me. After all, my Mother had found the pamphlet for the Autologous Stem Cell Trial here at the NIH in my own Doctor’s office. For once I could not chide her foraging behavior. For once, it all happened just as it was supposed to happen. I don’t even recall when I did it, but I wrote an email and within a few days received an older version of the protocol (which we have since, together, worked on changing for the better) which brought me to today.

As much as any other protocol, treatment regimen, and possibility of rescue from this disease, this was the only one meant for me. It was meant for me because somewhere in the sylph-drenched oceans beneath Yggdrasil, my brother Anup, in a prelude to salvation stirs sweetly in memories where he plays on honeyed trees. This was the only possibility for me because only I could have been the seed of ouroboros for me: an auto-logous reincarnation. I hope one day, that my sister awakens in her own cycle of rebirth and together, we’d finally have the definitive nocturne to underline – the song that preserves in amber, the golden sacrament of trauma turned free.

The Chinese myth of the red string of fate is analogous in many texts to an indefatigable super-power: a will greater than can be conjured from the ground. However, in an effort to romance the truth I begin this story by saying: it just all happened as if it was meant to be.

Recollections

Day -5: Dementia, did you call my name?

It’s funny how the modern organism is but a hairs-breadth away from rescuing itself from the doldrums of senseless malaise, but yet, when provided with a prolific list of accessible things to do, reacts like a lost trapped lab rat. I have on my retractable table: a comprehensive list of movies available from the library, a recreation event calendar, a pamphlet for spiritual services, and of course, my own unassailable group of technology-based media-diversions that have, until this point in my grand life, not failed me. Suddenly, as regiment and routine has a way of imposing upon consciousness the discovery that the bindings of physical space can indeed trap the eternal and invisible soul within a point in time and hold it hostage, I hear the call of a strange beast, one that reaches out to me (perhaps from Kierkegaard’s planes of existence) and I wonder, “Dementia, did you call my name?”

A quick look at the list of DVD’s available makes me sad. The highly responsible and well adjusted member of the task force put in charge of acquiring this media did his/her job very well. There are seldom any names on here that I do not recognize, but sadly, that is the sole reason why I cannot connect to this wonderful selection. One after another, thrillers and hits fall off the tip of my tongue and I feel little to no interest in engaging with the material. I remember a scholarly friend of mine who had suggested a change in my thinking many years ago: if, when compared to two isolated but similar systems (Schrodinger’s locked boxes, so to speak), you find yourself trapped in one, but free in the other, then the answer must be within. Of course, the ‘within’ described here, is the temple of endless thought and not the locked boxes. The irony is also in the fact that, external to the temple within, I find myself chemically decaying, but unlike the forlorn “dead or alive” kittens, I am being broken down to be built up.

So I respond to the call of Dementia, hoping to march on through sensible and senseless pursuits: the endless refilling of water jugs, the careful chronicling of oral intake and excretions, the clockwork checks of ESPN and ESPN Cric Info, and the boring managerial pursuits critical to the successful administrative use and distribution of monies and resources that ensure that my Mom and Dad continue to remain propped up suitably, as their son languishes in extra-critical reasoning and conversations with a demented version of himself trying not to let the growing heartburn rip the last semblance of unabashed freedom from within him like the beast that it promises to be. Perhaps, then, it is this very irony that I find solace in: the irony that I find myself named the same as the one who calls me by my name.

Musings, Recollections

Day -6: The Demise of Oblivion and Charity’s Child

If I was asked in all those many moments before the transplant, to describe pain in its forms most chaotic and wonderful, there would have been a part of me that felt strangled by the limitation of translation. To adjust for this built-in failure of comprehension, is a series of performance metrics as my Kittu Uncle reminded me when he visited me with my cousin (on his birthday, mind you) who I had not seen in quite a few months. The performance metrics by which I could judge the state of being, Cartesian or otherwise, are all rather simple and meant not to strive for great insight, but to bridge the blank stares of a row of familiar-faced doctors with an even more vacant facial impression of the same inmate in 3-2440. And yet, lost in the innocuously muddled words with which we try to force out our existence into easily translatable, comprehensible lingo is the slow advance of biology responding to the charity of technological manipulation. The PICC line in my left hand leaves me nervous and agitated during the early morning hours and the slow burn that has not left the IV access on my right, like twin stampeding horses, awaken before I do, well before the obligatory 5 AM vitals, labs, and data reconciliation.

I am waiting, like a maiden of yore, glued with her sextant and compass to the endless bleak-skied horizon for a glimpse of torn red-and-white cloth. I am waiting for some symbol, some small harbinger of hope that will justify even the worst news possible to release me to the bosom of knowing something rather than waiting for the sea of possibilities to swallow me whole. After all, doesn’t charity’s child ultimately deserve to sink slowly over the edge of the flat world and discover for himself that where he began was filled with lies; that the truth about the biological condition was simply that it was too unruly, still, to be manipulated fully; and that now, finally, those victim to the consequences of choices they never made, can see the broken-masts in the water and know finally that the demise of oblivion is here. With brute force data, labs, and a burn that begins to consume me from inside, I order yet another breakfast, knowing that just beyond hence lies a different kind of pain: one that is integral to salvation.