Blood, Sweat, and Tears
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.
Ali you amaze me with every post, every blog and every update i hear from your dad and aunt donna. Keep on fighting! you can do this!! love and prayers continue to go your way. Sandy
I am so proud of you. keep that positive attitude, Love you!
Extremely well put. You’re amazing! Love the eyebrow comment… Now that’s living in the moment!!
I love you Ali, ever since we were friends, you’ve always been so good with writing like this, i love it 🙂 Hang in there scruff ❤
It’s like you’re fighting with your hands strapped behind your back; but keep fighting, you’re built for it. Win from within.
I Love you – Tyler
Aww, Ali, it’s totally spot on you. Great blog entry. I love you. Dad