August 6, 2015
TODAY IS THE DAY I AM FINALLY SET FREE! Many of you may have seen my dad’s preemptive “proud papa post” on Facebook announcing that yesterday (Wednesday) was my scheduled liberation day. But unfortunately, as my family and I have learned these past few years, there are plenty of unexpected surprises when dealing with how the hospital works (often times slow as molasses) and how the body never seems to keep to a set schedule and cooperate when I want it to. (I woke up with horrific back pain as a lovely side effect from a new injection medication they wanted to send me home on.) At least today things are running somewhat on track. I like to consider myself the happy inmate finally on parole or the fragile, rehabilitated animal that is released from its cage, back into its natural habitat. But I’m also experiencing the downside of that, anxiety wise. Just all the regular, unremarkable stimuli most of us deal with on a daily basis like loud street noise or a full room of people talking will probably take some getting used to. But until then, I will rock my giant Tori Burch sunglasses and put some headphones on to tune out for awhile. Must not to forget to breathe! My mom, bless her heart, has been running around since yesterday afternoon packing up the five months of my life that has accumulated this room. It was total déjà vu from when we had to do the same thing at school when I was first diagnosed with sarcoma and then the a year later when I was diagnosed with the treatment related pre-leukemia. I had and still do have all these mixed feelings about coming and packing up and going. But in a positive way, it’s like I’m still moving forward. On to newer and better things, I hope! I make a promise to you readers and to my own self that I will become more regular with my posts, so a new one about how I’m coming along at home will definitely be coming soon once I get myself settled and back to a more “normal” routine in my own environment (AT LAST!) Thank you all for taking this journey with me and for all your kindness, support, and uplifting prayers — not only over these past five months of terribly choppy waters, but over the course of almost three years along my battle. I wouldn’t feel as strong or empowered without all of you!
July 21, 2015
Greetings from my MSK penitentiary! I’m deeply sorry I haven’t written in so long. I feel like a tragic version of “Where’s Waldo” in a straight-jacket amongst a sea of stethoscopes, pills, blood pressure cuffs, nurses in obnoxiously colored scrubs, and doctors dressed appropriately as clowns. Only within the last week or so has the straight jacket known as depression and anxiety loosened its grip. Despite all that’s happened in the last few months, I feel like I am now mentally stronger, more capable, and clear headed to re-enter the blogging sphere to reach out and even begin to share what’s been happening on the Ali rollercoaster ride. So buckle your seatbelts and hold on, here goes!
Catching up on the last four months, where have I been? Ok, to crack the nut-shell, by the time of my birthday in April (Thanks, Danielle for being there!), my body started going down big time. Killer T-cells had taken over my lower intestine and my blood cells, thinking my own blood and guts were enemies. I didn’t know this at the time, but my parents were told to “hope for the best, but be ready for the worst” at least twice. You cannot live long without white (immune) cells, nor can you get a bag of them for transfusion. As a result, I was getting life threatening septic infections. At one point, I had three different infections, and although I was awake and somewhat alert, I was only awake and alert enough to know that something was going terribly wrong, and that docs and my parents started looking at me with kindly faked smiles and sad eyes.
I continue to think that I am the luckiest unlucky girl on the planet, as doctors told my parents that most adults do not survive one of these septic infections, let alone seven or eight, many of them simultaneously. To combat the infections, I was pretty much as antibiotic-infused as a non free-range chicken, and given enough immune suppressive medications to kill a kitten – nine times over. There were so many med-bags hung on my pole that they needed a second pole with nine or ten pumps grinding out a list of meds longer than my arm just to keep me alive. My port was connected to at least 9 different lines, threaded around like California freeways.
I was loaded up on morphine and Ativan to keep pain at bay, but mostly to keep me from realizing what was happening to me. “Going under” has been one of my guiltiest pleasures of total body “healing,” an instant feeling of heaven. I’ll never judge another addict in my life. Every problem in life can be solved with something that knocks you out — except then there’s the “wake up.” I suppose death can offer the same relief, and seriously that does bring me some twisted relief, but I wasn’t quite ready to go there yet if I didn’t have to.
So very fortunately, I survived the septic infections, suddenly stopped getting them (thank you for the life-extension, higher power!) Unfortunately, however, in the few weeks that I was going down, I lost my ability to walk, as my once strong dancer legs shriveled to two weak sticks, flamingo like, except not as great a pink tone. I experienced two serious falls, but luckily the only thing that broke was a bit of my confidence and spirit. As I look back on that break in writing this, I realize that I got up after each of those falls (even though I’m scarred now, fearing hard surfaces!) I don’t want to take the credit for my “uprisings,” although anyone who knows me will know that that word fits. The truth is, my mood did break hard. Watching all my peers graduate this past spring hurt even harder. But somehow, I did hold on. I feel like a farce whenever someone calls me an “inspiration,” because all I have to do is look down on my weak and morphed body lying in the same position day after day. I have to give in to the idea that simply enduring is all that it takes to be inspirational. I’m working on it, and in hindsight I guess I’m still here, so it’s true. The trick, I guess, is that in just moving my body ahead sometimes, and leaving my mind behind, I can get to the hindsight part. I just got up.
I got my second transplant and the beginning of my third life on May 19th, when my prior donor, came to the plate for me a second time and literally gave me a piece of his life back; the transplant gave me back a piece of myself that wasn’t even me in the first place! Pretty surreal. I successfully engrafted in just five short days, but this time around I am being kept on high doses of immune suppression until my blood can identify me as a friendly stranger, not “the enemy.”
After almost five months straight in the hospital, I’m alive, my counts are holding steady, and I’m strong enough to begin to regain my dancing legs, Ms. D ! Not being able to walk, to be completely dependent on everyone to do things for me, and losing many of the simple pleasures like hot baths (my prior twice-a-day escape) and acting out my anxiety with manic arranging and cleaning has been especially difficult. I am now in intensive daily physical and occupational therapy, and the hope is that I will be able to get strong enough to come home and receive outpatient and at-home rehabilitation. I’m trying to avoid inpatient rehabilitation. I really don’t think I could take another institution, especially a new one where no one knows me or my body.
I’ve done a lot of holding on since December, 2012, literally and figuratively. For me now, holding on takes on the physical form of my holding on for dear life around the necks of my PT and OT specialists and my Mom and Dad, as they help me to take a handful of steps. My dad joked with me that he got the pleasure of living through my first steps for a second time — though this time, it was difficult to tell which one of us was more excited. Holding on, in all the facets of meaning including patience, endurance, hope, surrendering to reality vs. what I want, and reaching in to myself and out to others is, though I hate to admit it, the secret to why I’m still here. I learned young and dumb that I am part of an interconnected web that I had once thought I wanted nothing to do with. When cancer struck, I was a 19-year old who had just gotten her sea-legs and started feeling strong and adult, and independent from outside assistance in the “important” domains of life. The longer I hold on, however, the more I realize that maturity comes not only in realizing what I can do on my own, whether it be to walk again, study again, or enter the social world again, but in realizing what I can’t do — and what I now know I cannot do alone: live, love, and yes, hold on.
I asked my mom and dad to make sure that no matter what, no matter how I felt and no matter whether I could type this out or not, to make me publish this blog entry. My father can say for me that since my passing was not predicted, I didn’t know that this would be my final past. Being cooped up at sloan for six months, I planned for every eventuality. I do let my father speak for me here because we talked about every possibility for my future. This is my Plan B preface to what I thought was my next post in case it was my last.
It’s not like I never thought I might be leaving you for a long time, and I did voice to my parents only a couple of times that I was scared I might never never see them again, and that as nutty as this sounds that I feared missing my parents, brother, and sister more than anything. I didn’t want them to see that too much. I’m no hero. I rarely showed my deepest fears because it was bad enough to see how my parents looked when it seemed like I had a good chance. To cause them pain by my upset would be to face a guilt even Sweet Brown would say “I ain’t got time for dat”. So this was to be my plan B preface to my last blog “just in case, ever the ” “pessimist planner.” May It serve as a loving goodbye by all those whose lives touched me. You know who you are. I’m sorry I didn’t have the time to get to do that, but the good news is that I never thought I wouldn’t get the chamce. And this preface proves that ultimately I did.
Subject: Nursing Assistants
“Can’t live with ‘em; can’t live without ‘em.’”
Yes, I realize that this expression comes at the end of a Britney Spears song in which she is actually describing bad “boys” and breakin’ it down hard on the dance floor, but it’s also a really good way to describe the way I feel about the nursing assistants that work here at the hospital. Nursing assistants are supposed to do as their title says, assist the nurse. Doy! But sadly, they usually end up becoming slaves to whiney, spoiled parents of sick children who love to push the call bell or become slaves to the sick children themselves who bark at them to fetch their frozen chicken nuggets from the fridge, because they aren’t allowed to leave their rooms. It’s interesting actually, now that I think of it: I hardly see the nurses and nursing assistants interact much at all unless it’s in passing to confirm that little Jimmy took a giant dump in bed or that Michelle is sizzling with a 103 fever like she’s an egg on a hot sidewalk. Look, I DO feel bad that their only real clientele goes by the names of blood, vomit, crap, and piss. And maybe that’s why no matter how young and hopeful and eager the assistants start out, they end up all becoming jaded, a bit mindless, and just go through the motions to get to 7:30 when their shift is over. (7:30 is when their magic slippers go on, and they ride away in pumpkins, you know). But is it too much to ask that some of them use their frickin’ brains and some care and consideration to try to make life easier for those stellar, angelic patients such as myself?! Let me explain why I’m even “ranting and raving” in the first place.
So I’m sleeping, right? And sleep is extremely hard to come by at any time in the hospital (even with major tranquillizers coursing through your veins), because there’s always another pill to wake up and swallow or the IV pump starts to alarm at an absolutely deafening level (one I believe could stir even a hibernating bear.) But worst of all, I think, is the constant monitoring of vital signs. The assistants come around at pre-set times (every 4 hours) and take your blood pressure, pulse, oxygenation level, and heart rate. Basically, they wanna make sure and record on little index cards tied to their hips with old rubber bands that you’re still living and didn’t croak from the deadly cocktails you’ve received since the last time they laid eyes on you. So this means that at the un-Godly hour of 5:30 am, I, the sleep-starved patient, get woken up and have to be poked and prodded. Have you ever been in a deep sleep and had a stranger probe you in the ear with a long, cold instrument that beeps? It’s extremely unsettling, to say the least. But this morning, it wasn’t the fact that the nursing assistant took my vitals that pissed me off, since I’m pretty used to it by now. It was the fact that a mere 30 minutes earlier, she’d been in my room to measure how much I’d peed during the night (as she was supposed to do), but apparently had not made the logical decision to combine the two tasks. Had she checked the urine output and the vitals in one fell swoop, she wouldn’t have had to wake me up a second time, when I was just falling back to sleep. I was on the verge of reaching that glorious state when your body goes somewhat numb and you acknowledge that you’re about to fall asleep, but the act of acknowledgement doesn’t even hold you back from the impending gentle descent. That kind of euphoria is so hard to come by when you’re in the hospital, amidst all the unfamiliar sounds and smells and sensations. One day, hopefully, as medical technology continues to advance, nursing assistants will be obsolete and they will be replaced by little electrodes that wirelessly transmit a patient’s vital signs directly to the nurse’s station. This doesn’t solve the dilemma of how bodily fluids are going to be handled, but I’m sure we can think of something creative!
All in all, I don’t want to make grand generalizations and say that every single nursing assistant that has crossed my path and interrupted my sleep is incompetent. In fact, there are two or three assistants with whom I have become quite friendly. We exchange pleasantries and can joke together. One even assured me that I never had to apologize or feel self-conscious around her, as my bodily fluids were what was keeping her from living in a shanty under the Brooklyn Bridge. Anyway, this is just me “ranting and raving”…I hope you’ll understand. Ta-ta for now; time for another set of vitals!
Woohoo!, the time has come for my second blog post! Happy belated New Year to everyone who is taking the time to “read me.” I’m sorry it’s been so long since I last posted, but the last month has been hellish for me to say the least, and every time I set designated time aside to write something of substance, I ended up either dozing off mid-thought, thanks to copious doses of other kinds of substances, be they Benadryl or my inner bitch or pessimism. But luckily, today I’m feeling more energetic and – dare I say sassy- so I can give you the low-down on what’s been going on, or at least the Spark-notes version.
The night after my initial post in December, I was home hanging out watching trashy TV on Bravo and doing some online Christmas shopping, when I noticed my nose started to bleed. This was no ordinary bleed, not like the ones my little brother used to get when he went “picking for gold,” but an immediate geyser that caught me totally off guard. After going through a roll of Brawny in ten minutes, I proclaimed it “Niagara Falls.” While rifling through WebMD suggestions at wits-end, my shall we say “emotionally nonchalant” brother breezed through the kitchen and announced in a video-game-enhanced stupor: “Oh hey, I think it might be coming out of your eye.” My eye?! Oh Jesus, thanks for the tip, Devon. At least he noticed something. Time for 911, or as I want to call it respectfully, my own private 9/11.
I was originally reluctant to do the whole ambulance thing because the prior time one of the EMT rescue responders was a high school acquaintance (AWKWARD!), and I was forced into this conversation which amounted to “Ah…so….ah….how have you been since high school?” Call it a tragic-comedy in every sense of reality TV, only real. I wanted to blurt out: “Oh things have been great! Cancer drove me out of college, and ah…is my wig on sideways as I review my list of allergies and meds with you?” I managed to feign enough “inner-cool,” and in my best articulation since freshman seminar, cavalierly managed: “Oh I’m doing fine…hanging in there!” There are other times, though, when the people I meet are new, cute (rarely), youngish, and male. During one of my nose-gush ER visits, a handsome male nurse was inserting a “rhino-rocket” into my nose (my only version of male-female intimacy these days), which is basically a fancy blow-up tampon. While I’m looking ultra sexy and zonked with a heavy dose of liquid courage (Benadryl), I told this male nurse “OMG, you have the nicest eyebrows.” They really were perfectly manicured! I wanted to straight up tell him he was a hottie-patottie, but hey, I didn’t want to be THAT forward.
Despite the very rare sightings of male eye-candy, I really try to avoid local emergency room visits at all costs (ok, who wouldn’t?) because EMT workers, ER staff drones, cops, and yes, the rare cute male nurses with perfect eyebrows look at me like I have two heads since I’m not the typical, quick “emergency pick-up.” No easy cuts or broken fingers here. I’m throwing around fancy medical terms like “thrombocytopenia” and “irradiated blood products,” while they’re still asking for my height, weight, and when the last time I took a crap was. The real kicker is always the part when the local ER nurses look at me like something out of “The Twilight Saga” when my blood type now reads O-positive when their old records say O-negative (A bone marrow transplant can change your blood type to the donor’s type – in case this question ever kept you up wondering.) No easy Biology 101 punnet squares here, people. These are the big leagues.
Since then however, I’m still dealing with severely low platelet counts and less severe occasional bleeds, because since my transplant, my immune system is producing antibodies that are killing platelets at rapid speeds, thinking they’re foreign invaders. See? Even my cells have an attitude problem. The docs don’t really know exactly why this is happening (the immune system is smarter than they are) or what is even the best course of treatment. So while they scratch their heads like a gang baboons with a lice problem, their default is to keep me inpatient “for observation.” (On a future blog, I will share some of my own more definitive hospital observations!) Boy, I miss the days when I could walk into my pediatrician’s office, get an antibiotic or some kind of medicine and walk out knowing that in a few days (or usually overnight), I’d be “all better.” I never appreciated that. I sure do now.
Currently, I’m on this new immune suppressant called “Rituximab” that is supposed to kill off the b-cells antibodies that are gobbling up my platelets. One of my doctors made the mistake of calling it “chemo” (I effing despise that word “chemo!”), which you can imagine freaked me out. I have been made pretty sore, achy, weak-kneed (literally) and fatigued, and I wanted like hell to avoid this new “chemo.” I post-poned it as long as I could because one of the little fine-print side effects is a 10% chance that all of my b-cells will be gone forever, leaving me dependent on external b-cell transfusions for the rest of my life. When I looked a little concerned about this new future prospect, the doctor actually looked surprised and responded: “Oh don’t worry. I have plenty of former patients trekking the Himalayas and bungee jumping in Fiji, so I’m able to hook them up with b-cell stocked hospitals in between activities.” Really?! Hmmm. Let’s see… from the life-menu, I’ll choose b-cells over bungees, thanks though doc…
The highlight of the past few weeks and my silver lining was being able to be home for Christmas and help decorate the tree (directing and delegating from the couch like I always did best). I was also able to take long hot bubble-baths and have my Mom’s mouth-watering Christmas lasagna, honey baked ham, and her famous cranberry pumpkin bread. Oh man, I’m drooling now. Ha ha. Despite all that, it didn’t really feel like Christmas happened though since I had to do all my shopping online from my hospital bed and I missed out on the annual family treks to the mall. As stressful as they may have been, I would have given anything to go and stand in line with all the other “healthy” patrons. Despite all that, I still do marvel at the fact that the LoConte family can pull it off though just in the nick of time. My family is truly amazing.
Even though I know my body is working super hard to recover and keep me going, sometimes I feel like it’s literally trapping me. And some people think elevators are too tight a space! Imagine feeling trapped in your own body?! I daydream of just running around and dancing and being my usual full-of-energy-self again. I know it’ll happen one day, and it’s a process to get there, but damn… being patient was never my strong suit I guess. Bone-marrow transplant recovery is like 3 steps forward and 7 steps back most of the time. The good news is that all (very recent) scans show no sign of cancer, and I admit, for that I am so relieved and grateful.
With all of this medical instability on the heels of the new year, I can’t help but have moments (ok hours, sometimes) feeling hopeless and completely demoralized… The new year brings about excitement, promise, and resolutions for most, but I’m entering this new year scared shitless about what the future holds. I guess I have my Dad to thank for filling my head with all this Zen stuff he uses to help himself and his own patients. I always used to roll my eyes at him and humor him while I agonizingly watched his Zen “clip of the day” from masters like Eckhart Tolle or Byron Katie (ugh Dad, not another damn Byron Katie video!). But I have to admit that some of that stuff has not only stuck with me but it has, without my even knowing it, become a part of me and my getting through this. Maybe I always had it in me. Maybe we all do.
Thanks to these zen masters, I have come to understand that any concept of “the future” is just an illusion, for me and for everybody. It’s all about staying in the moment and accepting what good or bad comes our way since nothing is permanent in this world- not even our troubles. So if we can relish in moments of humor and love, I’d say we’re all doing alright.
I loathe journaling…there, I’ve said it. It feels surprisingly good to get that off my chest. I’ve always loathed journaling, and journals themselves for that matter. They’re always the gift you get from your grandma or your mom’s good friend from high school who happened to be in Barnes and Nobel around the time of your birthday or some significant milestone you’ve reached. I imagine they are in the check-out line and think “Oh hey, this is cute! Everyone could use a journal”. Yeah no, not me though. I’m not trying to sound unappreciative or bitchy, but those blank pages can be very daunting! And in the past, whenever I forced myself to write a little something at night before bed, it always sounded super cliché when I re-read it in the morning – or as though I was writing something that I wanted someone to find at a later date. It was as though I was trying to make it extra detailed and exaggerated, so if a sneaky sibling or parent found it, they would have something juicy to report. C’mon, we’ve all seen those tween movies where it happens (Mary-Kate and Ashley, perhaps?), and it’s always endearing and cute to watch no matter how repetitive and totally expected. But what isn’t cute is a journal with a completely shredded binding from all the pages being ripped and scrapped in the garbage by the next day. Oops, sorry, Granny!
It’s funny though since here I am trying to blog, and one would think that journaling and blogging are basically the same thing. And to be quite honest, I do too; but I feel like it’s finally time to unload all my mental and some virtual desktop sticky notes (don’t you just love that app?) that I’ve been accumulating over the long time in hopes that someone, anyone could gain something meaningful from reading this. Today, in fact, marks the 2 year anniversary that I started this journey with “da da DAAA….. CANCER”. Yes, this is primarily a blog about cancer and all the trials and tribulations that go along with cancer – specifically with being a young adult with cancer. But I also want it to be a place of hope, laughter, and dare I say inspiration, for anyone who needs a pick-me-up or is bored on a Thursday night and is browsing around looking for something to read.
So I realized I sprung the word cancer on you pretty bluntly, even though it is in the title. For those of you who don’t know me at all or know of me but maybe not personally, yes I have cancer. Or HAD cancer I like to clarify….twice! So I guess my official title is “ Ms. Sexy Two-time Cancer Survivor”, and yes the sexy is required. Ha ha. In a nutshell, a dance injury led to the rupture of a tumor in my lower abdomen. But since the pain subsided by the next morning and there was only a slight swelling, I figured I had pulled an abdominal muscle or something totally benign like that. Up until that point I had been in perfect bill health, so I never ever expected in a million years that that swollen mass would actually turn out to be cancer, namely Ewing’s Sarcoma, a rare and very aggressive pediatric cancer usually found in the bone. (Although because mine originated in the soft tissue, it was considered all the more rare.) I found out on the Monday of finals week of my sophomore year of college, right before the holiday break. Needless to say, I was completely in denial and I think that’s what got me through the 2 surgeries, 7 rounds of intense chemo, and 3 weeks of daily radiation. Of course, there were days when I broke down, but I was so gung-ho about pushing through and getting to “the light at the end of the tunnel” where I would feel like myself again and everything would return to normal that I didn’t want to stop and consider that maybe cancer would always be a part of me. I was naïve. Treatment left me with very low blood count levels even months later, which meant I had to get multiple transfusions every week to keep up energy wise and ensure my blood was able to clot. Even though my doctors warned me that the prolonged delay in the recovery of my counts was considered abnormal and remained a concern, I still tried to move on with my life and go back to school figuring, “I need to move on! I can’t wait for something to happen or not happen with these counts, so let’s try and make it work!” Two weeks into the semester, my parents had to drive down to see me and deliver the crushing news that the low blood counts were a result of MDS, basically a pre-leukemia the doctors had confirmed, caused by all the treatment I had done for the Ewing’s. Yes, try to wrap your brain around that one folks…the TREATMENT FOR THE FIRST CANCER CAUSED THE SECOND ONE. I was told that that only happens about 5% of the time. Boy, did I feel special that day. As my head spun out of control, my parents and I quietly cried together in my room at the sorority house. Although I’d known in the very back of my mind that this was always a possibility (because of the low counts), I guess I’d imagined I’d be spared, because I had chosen to move on and “be strong” and had tried to gain back a sense of normalcy by returning to school. What scared me the most was that through my own research, I knew my only option for survival was to do a stem-cell transplant, which I read were extremely tricky and had high mortality rates at any age. My life at that point felt hopeless, and I remember even thinking for the first time about what I wanted my funeral to look like….only I wanted it to be called a “remembrance ceremony” and I wanted Italian food and snazzy wardrobe choices to be involved – no boring black!
Fast forward: These days, I am over the moon and wake up every day grateful that the transplant was considered a success (I will go more in depth about that in my next post since it’s most relevant.) And though I’m still dealing with some complications related to the transplant, I feel I am more open and have more love to give and receive from others and the universe than I’ve ever had in my whole life. It sounds corny maybe, and of course, I still have my sarcastic wits about me as always, but I can tell I have changed for the better, and the way I view life has shifted. I’m a more understanding and compassionate person, and I’m more patient with myself and others who are also going through a rough time. Before cancer, I only really cared about what directly affected me, and my world revolved around whatever I was planning or looking forward to – usually something fun or self-serving. I know I’m not alone in that, but now I’m taking the time to stop and appreciate even the smallest of blessings and the little things that used to seem inconsequential. This life shift has also heightened and solidified my interests and passion in the realm of beauty, fashion, and design, so I plan to touch on that a good deal on this blog as well. And though it’s a lofty goal, I’m planning on doing a corresponding channel on YouTube; I will leave the link to it just as soon as I have a video or two uploaded and ready to go.
SO, TO CUT TO THE CHASE: My main goal and the point of this blog is to share my thoughts and personal anecdotes, both hysterical and tragic, or tragically hysterical. I also intend to share tips and tricks, beauty and non-beauty related, for other young adult survivors that will hopefully help them along their journey. I know that when I was scouring the internet after I was first diagnosed and the night before my first day of chemo, I had a very difficult time finding anything that was informative yet personal. I just wanted to see someone on the other side saying “It’s going to be okay. If I can make it through, you can too.” However, basically everything I found on YouTube was sponsored and scripted by hospitals to use like propaganda or ad campaigns. I want this blog and my channel to be different…they will be different. Even if only a handful of family and friends and an internet wanderer or two make their way to my blog and watch my videos, this is worth it. Everyone in some way has been touched by cancer they say, so I want to show that cancer can be beautiful too.