Nihar 1 Lymphoma 0

It’s been 3 years since my last post. It feels like it’s been so much longer. I kicked cancer in the ass, I now have 3 amazing kids, and Donald Trump is a year out from completing his 1st (and I pray his only) term.

I’ve wanted to write this post for a long time, but got sort of complacent in knowing, or at least feeling, that the worst was behind me. I’ve had several follow up scans now and the results have been perfect. Each scan, and really the waiting, gets a little less scary. God, the waiting is really the worst. It’s hard for your mind to not race in a million different directions thinking about all of the endless ramifications of a bad result.  And you’ve got plenty of time to play out scenarios.  They usually make you wait 1-2 days before getting the results (unless you know someone in the radiology department where the scans go who can fast track a reading.  Thanks Bido

This last scan from a couple months ago was, unsurprisingly, the least intimidating one yet.  I crushed the scan and the results came back perfect.  On a whim, I decided to check out the fancy new infusion room now that Seton got its new digs.  Holy lap of luxury – if only I had gotten sick a bit later!  Kidding, kidding.  It was remarkable to see some of the same amazing nurses doing yeoman’s work, just like 3 years ago.  Moving from patient to patient, checking charts, watching the clock, changing IV and drug bags, saving lives.  Every now and then I think about sending them flowers; why the heck haven’t I?  I need to take flowers and Tiff’s Treats next time I go.

Rewinding back to 2016 for a moment – after my treatments and after my “Victory” party with friends and family – Beeral and I got some amazing, but at first terrifying, news to close out the year.  We were going to have another baby. This was of course a miraculous thing, but the terror came in the uncertainty around the timing.  What if it was too close to the chemo? What if there were complications? It didn’t take long for us to consult with the experts and it quickly became clear that this was a blessing, plain and simple. It was a reward for our family keeping our collective heads up through a difficult year. And man, was it a reward. Reva, now 2, is simply awesome. I never knew how much I wanted a girl until I got one.

As I write this and reflect on the last few years, I have to remind myself how lucky I am to be here. It’s easy to think about my bout with cancer as a challenge that I overcame and one that I’m now stronger for.  It’s not easy to think about the other possible outcomes.  Nonetheless, I force myself to during reflective moments like this or when I witness how, sometimes, people just can’t persevere.  There are so many examples around me.  One of the more recent ones was an incredible fight that a family friend lost to cancer.  It was one of those stories where he surpassed any estimate the doctors gave him.  Even until the end, he clung on with everything he had, pouring his all into those final moments that turned into final days, refusing to say goodbye to his loved ones.  Sadly, he wasn’t one of the lucky ones and sometimes it’s hard to find reason in it all.

I’m essentially out of the woods.  All that means is the probability of it coming back are much lower once you get past the high-risk window 3 years out.  You never know when the darn thing will rear its ugly head, but this is at least what the doctor and statistics say.  I regularly check my neck, usually by happenstance when I feel the scar tissue and subsequently feel around for anything out of the ordinary.  It’s sort of a reflex.

Thought it’s probably inconsistent and completely unclear in my voice, I am more than anything writing these posts to you, my children – Rayan, Aiden, and now Reva.  Yes, friends and family as well, but my primary motivation was and is to share my experiences from this time of my life with you when you would be old enough to understand.  Assuming that is now, years and years later, I want you to know that, even if I could, I wouldn’t change a thing about what happened.  I am so fortunate to be where I am today – surrounded by an amazing family whom I can’t begin to express how much I cherish and love – that I wouldn’t dare change a thing on my path here for fear of screwing it up.  We are all built from a combination of nature and experience.  My experiences include overcoming a pretty nasty obstacle.  But here I am, standing and living.  And here you all are, with a glimpse into your Dad’s past.  Now do me a favor and give your Dad a call

Love, Dad

 

It’s here, my last day of chemo.  This day seemed so distant just 5 months ago.  I couldn’t really picture it then as I had no idea what state of mind or body I would be in.  I had always thought my last month would be brutal, that this whole process would be a step-wise decline to the finish.  I had even anticipated additional time-off and short-term disability leave as a very real possibility.

Well here I am.  I haven’t taken any additional time-off beyond chemo days.  I’d say I’m functioning pretty damn well all things considered.  Nausea and fatigue can get the best of me at times, but I manage to bounce back pretty quickly (having an awesome wife who handles the entire load when I’m down definitely helps).  Most importantly, I’m been mentally strong through the process – focusing on crossing the finish line, on my amazing family, on life after.

This is #12.  I can’t help getting nauseous stepping into the building, and even more so stepping into the room.  If you could see this room, you may understand why.  There are about 15 reclining chairs lined along the four walls of the room.  They’re usually all filled with cancer patients, most of whom are reclined and sleeping (soon I will be too).  Loved ones sit next to most patients (for the most part, not me.  I prefer to do this part alone). 5-ish lovely nurses are running around with clipboards and masks and medicine – syringes, IV bags, medicine vials and the like – tending to the patients.   There are the familiar, patterned sounds that repeat over and over, like the rhythmic pumping sound or the beeping from all of the IV machines.  And then there are the smells in a room that has been filling itself with sick patients for probably 50 years.  Musty, sometimes alcohol-y from the cleaning agents.  It’s hard to describe, but it’s distinctive.  It’s particularly noticeable when you walk in, then you just get used to it.  Anyway, this is where I’ve spent 12 of my days this year.  And of course, there are all just contributing factors to my nausea.  The main one is still the anticipation of getting disgusting drugs that do weird things to my body pumped into me.  The thought always makes me cringe.

After this last episode, I’ll be off to get my petscan in about 3 weeks.  That SHOULD just be a confirmation of what we saw 3 months ago in the previous scan.  That this thing is out of my body.  Some time after that, I’ll get my port removed from my chest.  And some time in between all of that, I will commence partying and drinking 😉  I forgot what that’s like!

I haven’t forgotten about the next 2 weeks.  I’ll be sleeping off the infusion over the next couple days, my taste buds will be shot and I’ll only want to eat eggs and cream of wheat, and then I’ll be good for a couple days before fatigue hits middle of next week.  That will be my low point from which I return to “normal” over the next several days.

The end of this phase is near.  The next phase is remission.  My doc says I’ll have to do alternating cat and pet scans every 6 months for 3 years to make sure this thing doesn’t come back.  There is a 90% chance it won’t.  After that 3 year period, there’s basically no chance it comes back, or so he says.  I suppose that becomes my next milestone.

Ok, Ativan kicking in, drowsiness commencing….

Less than 1 month left! That’s what I keep telling myself and my friends and family when they check in with me. That’s the thing to focus on. 3 more treatments including today! It’s amazing how August seemed so distant when I had my first treatment in March. I didn’t know how I was going to get through 5 months of this.  12 friggin full-day treatments. Well here I am with the end in clear sight.

I’ve been able to mostly “skate” through the last month+. No major issues – no hospitalizations, no fevers, no additional work days off besides treatment days.  I think the $5,000 box of Neulasta they put on my arm after every treatment really helps.  Staying healthy is key.  Don’t get me wrong, I still have all the nasty side effects, but I suppose I’m getting used to them.

I have definitely picked up some weird eating habits along the way.  As my nutritionist described it, I have “a dead man dancing on my tongue.”  That dead man has been ruining some of my favorite foods for me.  So I fight back.  I’ve been drinking habanero pickle juice straight up.  It’s the liquidy goodness at the bottom of the spicy pickle jar infused with habanero peppers and it’s amazing.  Plus I can actually taste it.  I also poor Red Devil Lousiana hot sauce into my mouth.  Dead man can’t prevent me from tasting that vinegary-spicy goodness.  Though not a foolproof strategy, I do better with extreme foods these days – extreme spicy, vinegary, sweet.

I think I’m much weaker and smaller than I’ve been in a long time.  My arms and chest have deflated.  On my bad days, it takes every ounce of energy to get up the stairs.  On good days, I can’t say it’s much better.  I just haven’t been working out at all, besides the occasional push-ups and dog walks.  I cant wait for that all to change in September.

I’m of course not out of the blue yet.  After the remaining treatments, I’ll have a petscan performed to validate that my body has continued to progress since the last petscan. The best-case scenario is that it’s clean, I don’t need radiation, and I put this episode behind me.  The worst-case probably involves additional treatment and/or radiation.  I’m less concerned about that scenario.  I firmly believe I’m on a path to health and it’s how I cope when the going gets hard.

Anti-nausea drugs are in, sparking some drowsiness.  Now’s probably a good time to stop

Anticipatory nausea is a thing. Apparently some people get it on their first day of chemotherapy which I find crazy because they don’t even know how the drugs will affect them. The body certainly responds in weird ways. For me, as I start cycle 4 (treatment 7), I probably feel more nauseous than I have at any point through the first 3 cycles. I can’t help but think this is controllable and it’s all in my head. That it’s a sign of mental weakness. Well, maybe it is and maybe it isn’t. Regardless, I’m sitting here feeling sick to my stomach as my drugs get prepared for what seems like forever.

My recovery from treatment is taking longer and longer. I would say my body was back to normal by Monday or Tuesday of this week, as in days before it was about to get hammered again (today, Thursday).  There are certainly good days during that period too, just fewer and further between.  I started a drug called Neulasta after my last treatment. It’s this box with a needle and medicine that they stick on my arm right after I finish the treatment. I have to tell my curious son why there is a box that blinks green on my arm.  My story is that it gives me superpowers as long as he doesn’t touch it.  That seems to work.  Back to the funky contraption – the needle is deployed immediately, but the drugs don’t dispense until after 27 hours so they don’t interfere with the chemo. It’s only been on the market for like 6 months and prevents the patient from having to come back the next day. The drug stimulates bone marrow activity to generate white blood cells. It also gives me crazy chest and back bone pain, to the point where I can’t walk at times. Crumbling to the floor is never fun. Hopefully the intensity of the pain lessens with each dose.

My other fun ailment these days is uncontrollable, deep guttural hiccups.  The kind that make my whole body convulse.  They seems to last anywhere from 3-4 hours.  Not the funnest thing in the world.  It will be interesting at work if they spring up out of nowhere.

I’m almost 60% of the way through this thing.  I need to keep powering through.  Yes, I’ve got some crummy side effects, but i can still function mostly normally – I can take my kid to soccer practice, I can go to work, I can drink an occasional beer with my buddies, I can take Beeral on date nights.  I’ve got about 2 months left!   Need to put my head down and power through!!

 

Today is Thursday, May 26th.  It’s been about a month since my last post, not for a lack of activity. As I write this, I’m getting treatment #5, a week after when I was supposed to get it.  I had the pleasure of spending last weekend in the hospital because of a neutropenic fever (a fever accompanied by a low count of neutrophils, a type of white blood cell). Eventually, my fever came down and more importantly, my neutrophils count came up (well maybe less importantly from a medical perspective, but it allowed me to get out of the hospital once my fever got to a more reasonable level).  It meant that my body could fight for itself again.

Here’s the thing about this treatment I’m receiving. It’s supposed to destroy my cancer cells, yes, but also any other rapidly dividing cells. That means it impacts my hair, my mouth and taste buds, my digestive system, and my bone marrow which produces rapidly-growing white blood cells. Low WBC = inability to fight off infection. So when I came in on Thursday the 19th expecting to knock out chemo treatment #5, I was denied because of my low-grade fever. Anyway, here I am 1 week later.  New completion target date is September 1st, but clearly highly subject to change.

What I’ll need to figure out is how to manage not getting infections with 2 little kids. They are little germ factories at the ages of 10 months and 3. It’s probably impossible unless I quarantine myself in the guest room. Not to mention I don’t think I’m capable of staying away from them. Interestingly, I’ve noticed that Rayan is much more clingy to me over the last couple months. He hugs me more and climbs on top of me more, which I ordinarily love. It kills me to have to tell him to get off. It also kills me when I leave the house and he says, “Daddy go hospital?” Smart little cookie. Anyway, I suppose it’s a balancing act. We’ll be pulling Rayan out of summer school which I think will help.

On to the good news – I had my petscan done after #4. The results were awesome. The cancer cells have cleared out of my lower lymph nodes around my spleen and abdomen, cleared out in my left neck area, and are nearly gone in my right neck where it all started. The cancer that remains has a very low metabolic rate – so it’s not multiplying and spreading. Having gotten nothing but bad news really for the last few months, I finally got a dose of good news. And I desperately needed it

Other rapid fire updates – I saw a nutritionist a few weeks ago.  He’s this awesomely crazy German who grows wine grapes (in Texas, mind you) in his spare time and came highly recommended.  Now I’m taking a bunch of additional pills too like garlic pills and B-12 supplements.  Family Feud aired last Thursday!  I’ve been anxiously waiting for this day – turns out we still lose.  Got another haircut – getting more used to this Daughtry look.  And luckily my beard is still in tact.

I’m getting the Red Woman’s Elixir right now.  God I hate this thing.  Why is it red?  Can’t they dye it a more normal color?  I’ve definitely created a mental block for myself.  Oh well…7 more to go after this one!

 

It was sort of a fun and terrifying game – small tugs at my hair would now yield a clump in between my fingers. On average, I was up to about 30. I read somewhere the human head has about 100,000 hairs. Well let’s be honest, I was already down a few so a couple thousand pulls should do the trick. Or OR I could just have Beeral’s hair stylist come over and do it the right way.

It definitely wasn’t the funnest experience I’ve ever had. The slow crawl of balding helps you sort of come to grips with it over time and if it gets overwhelming enough, you shave it off. The finality of getting my head shaved out of necessity, not really choice, left me unsettled. I suppose it’s a rite of passage and I should just deal. As my friends frequently remind me, it was coming out anyway.

Going into work was fun. I had only told a few people prior to the Monday. So I decided to blast a note out to a wider audience of co-workers on Sunday night. It’s just so much easier to do it this way than have awkward 1-on-1 conversations about my hair. Unsurprisingly, everyone was so cool and supportive. Some people wanted to talk more about it, others preferred to not mention it and carry on business as usual. Hardly an awkward moment.

2 days ago, I had an oncologist visit followed by treatment #3. Dr. Goodgame, very appropriately named, checked my neck and couldn’t feel any of the lymph node swelling anymore. This is obviously super exciting, though it’s just a physical check. The real test will be the petscan after treatment #4. He’s also taking me off the bleomycin (‘B’ in ‘ABVD’) because of my nagging, phlemy cough. It’s just a precaution and studies show it’s not a critical component of the treatment, so he says. Bleo, as it is affectionately called in the medical community, can cause lung toxicity.

On to treatment #3. The Red Woman’s Elixir makes me nauseous just thinking about it. Just the whole thing and having to get it pumped manually and eating ice. Nasty. Well, I made it worse. I had the brilliant idea of throwing some OJ in my crushed ice! “See look, I made an orange slushy” is literally what I said to my nurse pumping that red crap in me. She looked at me and awkwardly smiled. I think she knew it was an awful move and let me do it anyway.

My taste buds are now shot. I asked Beeral, “have you ever accidentally tasted your ear wax?” Her quick response: “Uh no” and so I quickly respond, “yeah, me neither” False. That’s what my mouth tasted like, with a faint hint of orange. I had a Chi’lantro spicy chicken burrito yesteday and it didn’t taste the same. Then we got out of the house and watched Deadpool last night while Mom and Dad babysat. Great flick. The worst part of the experience was having 1 of my great vices in life – movie nachos in all their fake cheese glory – and even that didn’t taste the same. That’s what I call taste bud rock bottom.

All in all, besides the taste bud thing and the 2-week old cough that my depleted immune system is almost done defeating, I feel great. Nausea has been minimal this time around, as has fatigue and dizziness. Let’s do this! 25% done!

Quick post-treatment update:  I am now 2 days removed from my 2nd treatment.  Other than a bit of nausea and lack of sleep, it’s been a cakewalk.  If it’s going to be like this for the next 10, I’m going to kill it.  It won’t be, but I’ll cross that bridge when I get there.

I decided to get a haircut this morning.  I don’t actually know when it’s all going to go (all my reading on the Red Woman’s Elixir says soon) , but I do know my hair is out of control at the moment.  Plus, I’ve got this beard now in full force and it doesn’t blend with my side burns and goatee.

So here I am waiting for them to call my name.  For some weird reason, I decide to gently tug on the hair on the side of my head.  Bad idea.  10 hairs come out.  F – U – C – K.  I’m not ready, I’m not ready, I’m not ready.  Crap, I can’t get emotional in a room full of dudes about to get their haircuts, but I can’t help it.  Don’t think anyone noticed.  I do it again, another 10-ish hairs.  So I guess it’s starting.  Awesome.  I text Beeral that it’s time to do some hat shopping.  A few hours and a trip to the Domain later, I’ve got 2 more to add to my growing collection.

It’s just hair.  I shouldn’t care that it’s about to disappear.  But I can’t help but care, despite my mind and my being’s best efforts. Internally, it signifies a physical change and makes what is happening to me more real.  Externally, it signals my plight with the outside world.  The stigma that comes with it, the looks of pity, the questions.  That’s the part I’m not ready for.  Time to get tougher.

Today is Friday, April 8th. It’s Day 2 of 12 chemo treatment days.  My treatments are every other week for 5+ months, with the last one falling on August 25th. To be exact, start to finish is 151 days including first and last treatment days. August 25th is asterisked, circled, highlighted, and any other thing I can think of to signify my last treatment, figuratively speaking of course (nobody actually uses physical calendars anymore).

My first treatment was March 28th. I was surprisingly not really nervous about what would ensue. I feel like I should have been though. I had no idea how my body was about to react to the chemicals that would course through my body.

I’m doing the ABVD chemo regimen – there are 4 drugs in total, starting with the 4 letters in the acronym and each one having like 19 letters. I already have my least favorites from the little bit I know. The A one is red, comes in a syringe, and requires the nurse to manually pump it through my port.  I have to eat ice for the full 10 minutes to prevent mouth sores.  It also has the interesting side effect of making my pee red (don’t care) but also is the reason my hair will fall out. It’s like I’ve been taking that one for years, ha. Preemptive strikes against my insecurities make me feel better about myself.  But seriously, I’m not ready for all my hair to fall out. Let’s call the A one the “Red Woman’s elixir,” in honor and excitement of Game of Thrones’ Season 6 about to start.  I also don’t like the D one, dacarbazine.  It’s the most likely culprit to make me nauseous and takes a full hour to dispense into my body.  Let’s call this one “Jack the Dripper.”  I swear, I’m staying super positive despite what these nicknames might indicate

The first treatment day was actually totally fine. I lounged in my chair, ate my packed lunch, and finally finished the last 5 episodes of Narcos.  That night was a different story.  My body had a very violent reaction to the drugs. I later found out that it was probably the physical manifestation of cancer cells dying inside me. Well there must have been a ton of cancer cells that went bye-bye then.  You name the symptom and I probably had it – headache, nausea, stomach pain, diarrhea, dizziness, shivering….the list goes on. I was inches from passing out on the concrete floor in our downstairs bathroom, but somehow managed to hold it together.

Fast forward to today, April 8th. I woke up singing Sinnerman and Hozier Take Me to Church. Again, I should be more nervous, esp. after the last episode, but I’m just not. Plus I’ve got my friends, acetominophen and ibuprofen, in my back pocket to ward off those nasty symptoms after the treatment is over. Not to mention my anti-nausea drug cocktail.  So bring it!

I’ve recently been obsessed with Led Zeppelin.  I mean, I’ve always been obsessed with Led Zeppelin since I started listening to rock music in middle school (Thank you brother for introducing me to Rush).  But I go through phases and I’m on a Zeppelin kick.

Today is March 22nd.  I’m waiting to have an excisional biopsy procedure done, i.e. cutting out 2 lymph nodes.  We already pretty much know what this thing in my neck is, we just need to know the sub-type.  I’ll be heavily drugged up so it’s not like I’m going to feel anything.

So here I am in my gown in a freezing hospital room.  The nurse was nice enough to throw a warm blanket on my feet.  And so I wait.  Listening to Zeppelin on Spotify, in shuffle mode mind you.

A quick aside: I am not a superstitious person at all.  I don’t engage in any weird patterned activities or wear lucky boxers before KU games (sorry, it’s March Madness time.  We’ve got a date with Villanova in the Elite 8.  Spoiler alert – we lose).  I like to think I subscribe to reason and logic.  Others may disagree

The first song that plays on shuffle, “In my Time of Dying.”  Well that’s just ironic as hell.  I listen to it in its entirety.  Next song: “Stairway to Heaven.”  Hahahahaha.  Next song, “When the Levee Breaks.”  At this moment, I’m particularly intrigued.  I have to share this with my cousin Ankoor, the most classic rock-obsessed fellow I know.  He responds, “man, next is gonna be Achilles Last Stand.” “Ankoor, that’s what I’m listening to now!”  I was actually thrilled to get to this song.  I’m particularly obsessed with it at the moment.  It’s a 10-minute non-stop high and it gets me energized for the things about to happen.

Glad I’m not superstitious.

“ok, so I have some swelling in my neck. probably just too many drinks the previous night (Friday). damn, maybe not. ok I’ll get it checked out on Monday morning.” That’s precisely how my week unfolded. A weekend of bar-hopping with buddies from out-of-town, to a Sunday of unease and uncertainly to a full week of doctor-hopping. “It’s likely just a virus” says my primary doctor.  “We’ll still need to do a CT scan though.”  Then the phone call from a family friend who’s lap my scan fell into: “I’ve never seen anything this large that wasn’t lymphoma.” Wow.  This was all on Monday.

But that’s not even the day I’m referring to. There was still hope that it wasn’t that thing. I mean, it was just an image. Not a biopsy, not actual cells. Just an image. So on I went to the ENT the next day. I didn’t even understand how an ENT fits in this scenario. I’ve got a lump in my neck, not a sore throat. But I blindly move forward and have a needle stuck in me to suck out some cellular stuff. At the same time, given that I’m Indian and I have no shortage of family and friends that are doctors, my cousin, Nirav takes it upon himself to have his oncologist friend reach out to me. Before I know it, I’m talked into an appointment on Thursday.

Thursday, March 17th – that was the day. When my oncologists words fell on me like a pile of bricks and brought a certain closure to the week of uncertainty. He confirmed that this was cancer, lymphoma to be exact. As macho as I want to act on the outside, there was nothing I could do to quell the tears already forming. It was a harsh reality that’s just impossible to prepare for. With the doctor right in front of me, I can’t help but ask myself the next set of questions: “what are my chances?”  “what if I don’t make it?” What happens to my family?”