Mahanth S. Joishy is Editor of usindiamonitor.com. You may read Chapter 2 here; Chapter 3 here ; Chapter 4 here; and Chapter 5 here.

On St. Patrick’s Day of 2023, everything changed.

This time was fundamentally different from the previous major life changes that made up the key bookends of my life: moves between US states or nations, graduations from educational institutions, new jobs, a wedding, a divorce, winning professional awards, buying my very first house. On St. Patty’s, which will make the exact day easier to remember, I was presented a devastating medical diagnosis that involved frightening, ominous and deadly words, wholly unwelcome little words which you don’t want to hear said about you or anyone in your general vicinity at age 43, or any other age for that matter.  My long dance with cancer had begun.  Some of these fateful words I’d never even heard of before as we peel back each layer of the onion to arrive at the core of my very specific, very rare diagnosis.

Cancer.  Lymphoma.  Non-Hodgkins.   OK, these things I’d at least heard of.  Not that it made it any easier to accept that this was my fate we were talking about here, but at least I thought I understood some basic concepts about this new landscape.

Lymphadenopathy.  Cutaneous T-Cell Lymphoma.  Mycosis Fungoides.  Sezary Syndrome.  OK, so what the Hell were these blasted nefarious-sounding conditions appearing on my chart supposed to even mean?

Until something like this happens to you, or you are a medical school graduate, it is hard to fathom just how little we know even in modern times about human anatomy and the human mind, and the many thousands of diseases that can attack one or both of them, many with supposedly no rhyme or reason to suggest a cause that medical science can figure out, like my own new reality.  But when it happens to you, you suddenly desire to absorb all the information you possibly can, in my case the learning curve turbocharged by a free new AI program called ChatGPT that just happened to debut at the perfect time, and my dad’s decades of relevant experience both practical and academic.  

Sezary Syndrome is thought to be a small subset of Cutaneous T-Cell Lymphomas (CTCL), a.k.a Mycosis Fungoides, named after a French guy named Albert Sezary.  The syndrome simultaneously and aggressively attacks the body on three system-wide levels.  Skin, blood, and lymph node networks are all flooded with millions of little mutated microscopic cells that start to rage against the machine in a revolt against the corpus.  Just my luck… Sezary is exceedingly rare and special, with new confirmed cases probably numbering in the mere hundreds globally per year.  It’s also poorly understood and difficult to classify.  For context my father is a retired Hematologist/Oncologist with over 50 years of clinical, teaching, textbook authoring, and research experience who focused on cancer in many countries around the world; yet he never once encountered a single Sezary Syndrome patient over that entire span of time.  The condition is known as “one in a million” among the pantheon of lymphoma types, though lymphoma itself is more commonly diagnosed and the various types have some similarities among them.  By uncanny coincidence, or severely unfunny joke from the universe my dad Dr. Suresh K. Joishy happened to co-author a scholarly article debating over the relationship between CTCL and Sezary early on in his career, in 1978, literally the year before I was born and so… yeah sports fans keeping track at home… The very same year he and my mother conceived me and ushered me into this particular universe he was researching this rare disease at work.   A disease he would never even have occasion to personally treat over his entire long career, only to one day find out it would be his son’s destiny soon after he retired from official clinical duties. 

No need to pretend this unwelcome development hasn’t thoroughly fazed me.  I aim to be stoic but I’m definitely not at that level of heroism.  It started out as a shock.  I’ve already blasted through a rollercoaster of emotions and thoughts since.  I am dealing with my abruptly changed reality in a number of ways.  One of these strategies is to write about my experience so far, right here, and maybe print additional words about it into the future to chronicle progress, foremost because I know writing all manner of fiction and nonfiction has long been reliably therapeutic for me.  Second, publishing the journey will also serve to inform my many dear friends, family members, colleagues and general well-wishers about how I’m doing all in one place, easily and with as much detail as one could want, so that you are hearing the truth from me directly.  If you’re someone who cares about me and didn’t know, and reading this here is how you’re finding out, I’m sorry.  This was the only way for me to get the word out to a lot of people efficiently with the current state of my energy ebbs and flows.

The touching outpouring of support, love, and positive vibes I’ve received from so many of you has overwhelmed me, in the best possible way, and this is the number one motivator I’ve got going in my corner.  I am planning to fight to the gates of Hell and beyond with everything I’ve got for as long as it takes.  Many others have encouragingly paved similar paths before me.   There’s just no other practical way I can think of to approach it.  I know it’s going to be a long, tough road stretching over at least several years to reach the ultimate goal of a potential full recovery, with challenges and complications along the way both anticipated and unpredictable.  The road to a complete cure will depend on either a successful bone marrow transplant, or a brand new treatment being eventually developed that currently isn’t available on the market yet, with all variables needing to go the right way in either successful scenario.

There’s also the hope that putting pen to paper on this sensitive and super awkward self-indulgent topic could help out a stranger or two in some way who happens across this while going through something similar- to broadly include any serious health condition or even other types of severe heartache, really.  Some of you undoubtedly will face similar circumstances one day in the near or distant future, though I wouldn’t wish this on my worst enemy.  Perhaps when the time comes something I’ve shared here will resonate, to help somebody in some small way.  For those of us who are selected to face down cancer, we immediately become part of an exclusive club that only its members can fully understand and appreciate- although membership is entirely involuntary.

***

I’m now several months into the ordeal, and I’m getting adjusted to my new reality.  I have come to understand that the fight is far, far more mental than physical, at least in my tangle with Sezary thus far.  The mind can make it more than a fighting chance, in tandem with modern medicine and being an informed patient.  This was not at all intuitive to my previous pre-lymphoma self who used to fear facing a serious medical condition at some point in the hopefully distant future. The much bigger, more important, and more consequential struggle is to get your mindset right for the entire length of the challenging battle ahead, without succumbing to doubt and without folding at any point along the way.  The temptation will always be there to fold.  It’s a long game of will above all else.  Giving up in your mind can be fatal to the body.   Before this happened to me I would have surmised that mastering the mental part would instead be easier than the physical ordeals of the body.  The first mind game initiated upon finally discovering my new reality during St. Patty’s day after a battery of tests: I had an aggressive and rare form of cancer.  It had to be accepted and to deal with it in the very initial split second following the shock I immediately went into “fight or flight” mode.  An immense fear unlike any I’d ever felt before momentarily made me want to somehow run away from this problem, or bury my head in the sand and pretend it wasn’t real, as if this would solve anything.  Soon enough the other side of me that likes to pride itself on being a fighter emerged.  This part of me decided to try on the gloves and shiny boxing shorts for size to vainly model them for looks in front of an imaginary mirror.  This part of me wanted to actually try and relish jumping into the ring for the fight from the outset, and look stylish while doing it.  It quickly became obvious that running away was no viable option, and whining like a coward at this fate offered zero long-term benefit.

The physical is the easier part by a mile.  The physical symptoms of Sezary itself I have been living with (and enduring) for, at minimum, several years before diagnosis without even knowing it.  My condition has featured unbearable itching and bright redness all over the body, very similar symptoms to those I already faced consistently from pre-existing, diagnosed eczema since I was 8 or 9 years old.  This history with eczema may have nefariously served to mask my lymphoma from detection for some time.  In fact over the last two years I suffered through periodic sleepless nights due to my skin itching persistently all over- which was the main reason why I went on an at least somewhat effective “skincation” to Costa Rica in an attempt to relieve my itching before winter.  My pre-existing panoply of skin conditions ultimately made my Sezary revelation more difficult to arrive at.  The more recent, stranger symptom I discovered was swollen and mildly painful lymph nodes cropping up in my neck, armpits, thighs, and groin areas noticeably for the first time in late February 2023.  This was the critical and disturbing tipoff that triggered the medical staff at UW Health to order the appropriate biopsies, CT scans, and numerous blood tests that would ultimately provide confirmation of Sezary.  My dad advised me throughout that process, and has been since then as well. 

The pain around the lymphatic system is dull enough that the most treatment it ever requires nowadays is OTC Tylenol or Advil on occasion for the lymph nodes and the areas surrounding them, which are usually inflamed and tender, somewhat akin to mild bruises.  Perhaps frustrating discomfort is a better description than pain.  My general mobility and ability to exercise or do any other physical activity are not affected.  The itching is being managed better now by prescription oral medication and skin ointments.  Though the specter of another sleepless, itchy night always looms, these have thankfully become much more rare.  I am excited to report that 6 weeks into an expected 6 month initial course of targeted therapy, the worst effects to my skin and lymph nodes are already noticeably reduced.  Less pain, less swelling, and less itching.  Targeted therapy seems to be off to a good start.  These are the massive recent wins in my life I want you to know about and celebrate with me.

While it’s been a thrill to welcome long IV infusions of Big Pharma product Romidepsin coming through effectively for my body early on in the game, the therapy itself has presented the more troubling physical issues with its nasty side effects. The drug works by attacking the genesis of certain cells, but that lovely onslaught carries some side effects like many medical treatments for so many conditions.  The collateral damage will manifest itself in different ways for each person.  You’ve probably heard of, or seen someone you know suffer through nausea, vomiting, diarrhea, constipation, gas, bloating, stomach pain, hypoglycemia, anemia, and otherwise general digestive mayhem due to one or more rounds of cancer treatment options.  I’ve gone through it all in at least short spurts so far.  Add to that another bitter cocktail of near-constant fatigue for up to a week after each infusion, brain fog,  loss of appetite, and sense of taste being ruined for nearly all foods at nearly all times.  All of the above are entirely normal side effects, but they can pose a grave challenge to maintain your new work/life balance and any sort of social life in coexistence with the side effects.  However, each of these symptoms can be largely managed with a disciplined regimen of meds and lifestyle, if not completely or perfectly.  It’s definitely true that in this area practice makes perfect; whereas the three-day aftermath of my first Romidepsin session was a complete shambles, with a few more foibles along the way in the next handful of sessions, my last two weeks have gone much more smoothly except for fatigue and appetite problems in the days after.  I’ve gotten better at living with these after making adjustments to my routine and medications.  Typically now I’m doing treatment on Fridays in order to rest up over the weekends with very few plans or activity outside the house until I go back to work on Mondays.

The point is that in my case, while these lymphoma symptoms and side effects from treatment are categorically unwanted and I wish I didn’t have to deal with any of them, none of them are that bad on their own and I can likely look forward to them continuing to get better over time if all goes well.  If I’m tired, itchy, slow, and feel nagging discomfort or mild pain around the lymph nodes, struggle to eat and face some mild digestive issues, none of these are really that bad compared to what other people go through.  Better yet, the worst of all these may already be past me.  Even my fear of having to frequently get poked by needles for lab tests and therapy infusions is more a source of misplaced irrational anxiety than actual physical pain.  Meanwhile, in the pleasant surprise department, the 5-6 hour ordeal of each targeted therapy session itself is oddly relaxing, and I’ve fallen asleep for very nice naps in every single case so far, which helps the time go by on top of reducing my general anxiety about the potential side effects that may arrive in the days after.  It’s worth appreciating these small victories when you can.

I repeat, the mental part is by far the greater struggle, and I’d guess I’m not alone among cancer or chronic disease patients in saying this.  Feeling bad for yourself, feeling guilty for what you’re your loved ones are going through, worrying about your career suffering with insufficient time or ability to operate at the usual standards, wishing this were a nightmare you will wake up from, letting the physical problems collectively add up to weigh you down with despair, wanting to quit the game itself, lamenting a social life and dating life forced onto the back burner, or jealousy of everyone around you living their “normal” lives cancer-free are all inevitably going to come up and rear their ugly head at some point, which is OK as long as you don’t dwell on these thoughts excessively.  Such dark thoughts are your #1 mortal enemies now beyond any factors outside of your control- but only if you choose to dwell on them rather than acknowledge their presence and power past them.  Getting prepared in your head for the long haul, for a large number of expected and unexpected new physical changes to the body that will place limits on your life, each in isolation may be bearable but taken together they can become more daunting to tackle.  In fact I’d argue that this mental preparation for the variety of pitfalls is the entire ballgame.  For me this psychological positivity will need to endure over the course of months and years.  And the very first thing I decided to do to get my mindset right, was to list everything that I had going my way as far as fortune, luck, coincidences, whatever you want to call them.

IN MAHANTH’S CORNER:

1. There is no better second opinion in the world than my own dad, and I don’t say that because he is a beloved parent.  If I thought he had been mediocre in his medical career this wouldn’t be top of mind. Instead he was objectively a leading cancer specialist worldwide, who speaks 8 languages fluently, and who is a highly talented artist.  For the first time, I’m glad to admit he is smarter than me when it comes to anything science.  His research and comprehension capability is still superb.  If I had to go to war with someone, he’s the one I’d pick.  My parents were living the retired life when the news came, and they dropped everything in California to be with me in Wisconsin for my initial month of planning and treatment.  This sudden new arrangement with my father’s detailed advice and suggested homework reading, and his help in navigating the complex medical system, coupled with my mother’s cooking and housekeeping were a great boon to get the battalion rolling forward.  Living together in my house also predictably drove all 3 of us crazy for a month- while at the same time we managed to have fun and get to know each other better too.  Round 2 of this experiment in sharing space and time under unhappy circumstances for a while will commence again in June, with each of us very set in our own ways with fixed routines, and we’re perfectly configured to annoy each other.  I am fortunate for the support and that they took care of themselves so well over the decades that they can play this role today at their advanced age.  We’re getting through this together as a core team, if not a perfectly seamless one.  I’ll accept some of the responsibility: in particular I’m aware that I’m more difficult to be around than ever before.  I hope we get better at it this time.
2. The unbelievable levels of support in various ways from so many friends and family, including my cousin who lives in town.  I have never felt so loved in my life.  Above all this key support makes me feel I’ve got everything I need in my corner to win it all.  I recognize this support as a rare blessing, and it is in the bad times when relationships reach a deeper level of meaning.  I’ve got it in spades.  Many relatives and family friends in particular are also knowledgeable doctors, being of Indian origin of course, and their advice gives me great confidence that one day I’m going to be OK and will have a whole formidable team of unconditionally loving, accomplished physicians and others behind me at no cost all along the way.
3. I have a job that I sincerely enjoy.  Never in my adult life have I been so grateful to be gainfully employed, and to keep my mind occupied.  I suspect that not being occupied consistently would lead me to dwell on the negatives, rather than live.  Dwelling is the enemy, and working has become my friend during this fight.  When I wake up on weekday mornings I can’t wait to drive my City Fleet issued Tesla Model 3 to the office and get after it.  I run a small government agency that is unusually high-performing for the public sector, and full of decent people.  I also hand-built my whole senior staff and genuinely care about them.  I am confident that my team is keeping things on track, doing what’s right on behalf of the community we serve, when I must miss work due to treatment or side effects.  I know my colleagues will be supportive of anything I need to do to get better.  Yes, my career goals need to slow down temporarily, and I need to learn to let go of the persistent frustrations of my job that seem less important now.  My life priorities have changed forever.  Yes, I had to cancel speaking engagements at the Department of Energy in Washington, DC, North America’s leading sustainable transportation trade show in Southern California, another conference in Chicago and others as my meticulously prepared fleet industry national speaking tour got rudely interrupted, but there will be opportunities to make up for lost time when this is all over.  The world doesn’t stop moving just because I need to slow down.
4. UW- Madison features a renowned research university hospital very close to where I live, with a top-flight Oncology/Hematology institute, Carbone Cancer Center.  By another uncanny coincidence, my father co-authored a scholarly article in the early 1980s with the Dr. Peter Carbone back when he was still alive and working at UW.  Never have I been more grateful to live in a university town, and not have to travel for hours or days to get to frequent treatments.  So many people are even forced to trek back and forth across state lines, or make extended stays at distant hotels, to get the level of care I take for granted right in town.
5. My job provides excellent health insurance, pension plan, and paid sick leave, among other valuable benefits that every job doesn’t offer.  I never realized  how important the bank of paid sick leave I built up over the last 6 years was until suddenly needing to use it.
6. Thanks to not having a break in service, I don’t have to worry about my income being interrupted, or whether I’ll struggle to pay any bills during this time of medical hardship such as mortgage and living expenses.  I simply cannot imagine how people or families struggling financially can manage to go to battle against disease on top of that.
7. I feel bad for anyone, similarly, who might live above the poverty line and are gainfully employed, but have no health insurance or a lousy health insurance policy.  Having to worry about how to afford your life-saving healthcare bills is a situation that nobody should ever have to face in modern America, but we know all too well that too many people suffer financially on top of physically, as we speak, through sheer bad luck and inadequate insurance plans.  This isn’t even on my radar as a potential worry.
8. Yes, it’s cancer alright, but Sezary has relatively mild symptoms and manageable treatment side effects as I’ve already laid out.  There’s just far less pain and suffering involved than other fellow travelers I see in the hospital, or what some friends of mine in town are facing in their own battles.  My disease was caught relatively early on, which is greatly in my favor.   I’m on the younger end of the spectrum, which is also in my favor.  My treatment plan can be more aggressive thanks to my age and ability to tolerate it.  
9. Meanwhile, I’m not going through any of this in one of our planet’s Hellscapes like Ukraine or Sudan, where violent conflict is preventing many people from receiving the most basic healthcare and dignity they need due to the cruel and selfish actions of some bad hombres.  In these and other countries we even witness hospitals and clinics getting bombed out with civilian patients and staff literally sheltering inside- which to me begs for the perpetrators of these cruel acts to get delivered a one-way ticket to some type of guaranteed special Hell one day.

This highly fortunate set of personal circumstances have helped elevate my mindset to a headspace conducive to giving myself better than a fighting chance, and to reiterate, my unwavering goal is to keep fighting until I win.  I say this despite lacking the technical knowledge of my complex condition or the contents of my lab reports to fully comprehend the true odds of complete or partial success, or all the potential complications that may trip me up on the yellow brick road to a full cure.  But think this way we must, for the alternative of harboring the demons of doubt will lead straight to certain defeat.

It’s good to have goals in difficult times, and in my case never have they been more important.  Beyond just winning against this rare cancer, I hope to actually be able to look back upon this entire experience as a blessing one glorious fine day.  To remember it mostly as the battle that made me stronger than before because it failed to kill me, molded me into a better person, and finally a guy more appreciative of the small and large things in life, especially the people in it.  That I hopefully inspired other people with my fight all along the way.  I will freely admit that at this stage I do not view lymphoma as a blessing in the least, because I’m not ready for that yet, but that is now my ultimate overarching personal aspiration.  My friend Nate suggested on the phone that I’d achieve viewing the experience as a blessing, randomly, within a day or two of me first thinking it privately on my own.  This and other uncanny signs from the universe have abounded.  I announce this grand aspiration in honor of those who have gone through much worse before me, like those men who were captured as POWs while fighting for our country and were then brutally tortured for years in hellholes such as Vietnam’s like John McCain and Admiral James Stockdale.   Both men emerged from the bloody dungeons to call those taxing years a blessing, which shaped their character and helped forge them into great leaders afterwards back in America.  Warriors like these have both haunted and inspired me with their notable courage and unbreakable spirit.

I will need to keep calibrating and tinkering to find the ideal balance between treatment side effects, work, family, social life, writing, and mindset in order to triumph over the less significant but ever-looming physical hurdles ahead.  Currently my most difficult pain point is the nasty taste in my mouth as a result of targeted therapy that makes most foods taste near inedible.  This will come as no surprise if you know how much I love the taste and feel of food, especially spicy food.  So I am forcing myself to eat as best I can, which is deeply unpleasant, but even this problem has a set of solutions I am researching and experimenting with optimistically to get past it.

If this article is well-received, I’ll plan to continue using usindiamonitor.com to update about my personal battle underway against the enemy within.  I’ll also keep writing about current affairs here to stay occupied- though lately I’ve decided to spend more time on higher level philosophical angles rather than the baser level political developments of our times, which just seem less important now than before to me.  Meanwhile, I am also going to keep fighting to get my first novel manuscript Subterfuge in the Septagon (chapter 1 draft available here) published in the coming year, and finally put to rest another multi-year battle full of struggle while keeping the life of the mind engaged.

Thank you for sharing this personal journey with me by reading this far.  And to end for today, I wish you most of all good health far into your golden years.