The hodge is the nickname Jenna and I have decided to give Hodgkin's Lymphoma, which I was diagnosed with on April 11, a day after I turned 24. (Looooong back story to come.) Jenna and I were texting some day soon after and both decided the word "cancer" is not a word we felt like saying all the time anymore. It is an ugly word that only became uglier once I found out it was inside me, as I'm sure many other people who have had it/have it currently also find. And though I'm of the sound belief of reclaiming bad words as something powerful (thank you, women's studies), this is not one I wanted to do that with. Secondly, nicknaming things has always made them somehow feel like they belong to me more, that they're closer to me, and it was important to me to do that with the hodge in order to take control of it and how I view this whole process.
I also discovered it scared people to hear "I have cancer" when it's not placed in any context. So, for some context: the hodge is a type of lymphoma that's (here's the best part) extremely treatable, much more so than Non-Hodgkin's Lymphoma, of which there are over 61 different types. So to hear that I have what I have been told as "the cancer you'd hope to get if you have to have cancer" was a huge, huge relief to me and my family and friends. But before I start backwards storytelling, if only for my own benefit I want to outline the entire process thus far.
This past winter, I had a lot of respiratory problems that I attributed to living in a part of the world (Brooklyn) where it gets cold, where people get colds, and they make you feel crappy. I also developed a really, really aggressive full body itch that I also blamed on cold weather, even though I was moisturizing like it paid my rent. I had been coughing steadily for a few months, but avoided going to see my doctor, who was on Long Island. But then in addition to the coughing and itching, I began waking up in the middle of night COVERED in cold sweats. The first time it happened, sometime in December, I thought it must have been a nightmare, and I went back to bed, only to toss and turn in discomfort. Then it kept happening--not every night, but it was enough to freak me out. I'd sweat so much I'd drench the neck of my t-shirt and the hair around the base of my head as if I'd just worked out for a long time. After a discussion with my roommate Andrew, we decided I should head to the doc.
A doctor's visit, a diagnosis of bronchitis, and a bottle of antibiotics later, I felt better, but not totally okay. Then not totally okay developed into OH MY GOD is THIS what a sinus infection feels like? Because it is AWFUL. (I'd never had one. Although it introduced me to the magic of the neti pot, so..) Back to the doc for more meds. The sinus pain lasted about three weeks, which seemed to be longer than most should, but after it finally went away (around late February), I felt great (though still really itchy)--ready to end hibernation and for spring to get going. And after months of looking for a full-time gig, I found one as a receptionist thanks to a friend who worked at a fabric company.
I was there for about three weeks when I started feeling ill again. Even though the weather was getting nicer, I couldn't muster up the same energy that yearly I can barely contain when spring comes around. I attributed it to having to wake up at 7:30 as opposed to the ten a.m. I was used to, and doing the same tasks all day, every day (the job was super monotonous, and I am easily made antsy, especially when alone at a desk all day). Then, during the third week of March, I began the night sweats again, along with a strange chest pain, stiff neck and back, and fatigue. Friday the 25th was one of my best friend's birthdays, and I couldn't even fathom doing anything but laying on my couch and watching "Diary of a Wimpy Kid" with my roommate Sara, which we did, and which you should not judge us for, because you KNOW you laughed at the commercial for the second one when it came on TV, and it was actually a phenomenal little film if you can get on a sixth grader's level (which we can and do).
The next day I borrowed a copy of Andrew's "Franny and Zooey" (with the promise I wouldn't eat while reading it since I dropped a piece of pizza on his copy of "The Corrections") and took a train home to LI for some R+R and a doctor's appointment. I planned on demanding the strongest medication they had for whatever it was I had, and finally and fully kicking it.
So lalala, uptown to the doctor's office, where I told the doctor everything I just wrote (aside from the Wimpy Kid bit) and he did an examination. After I had to argue that I was sure it wasn't bronchitis, and it might be pneumonia, he did a chest x-ray. While I was waiting for my doc to come back and tell me I had pneumonia, I thought, "This is gonna suck, I might have to go to the hospital to be hydrated, and I'll have to take sick days I don't have off from work, whine whine whine." This was the scene that followed:
doc: "Ok I found something on the x ray"
me: "So it's pneumonia then?"
doc: "No, it's something else, not quite sure...."
me: "Ok so what could it be?"
doc: "Well it could be a tumor"
me: instant hysterical crying drowning out all his other words and full body heat wave.
I remember trying to get it together and apologizing for not being able to. I mean, I probably lost it more than my doc thought I would, but to go in thinking you have a routine sickness and hear the word "tumor," you can't really prepare for that.
He left me to get dressed and I called my parents, who both came into the office. My doc ordered an immediate CAT scan to make sure it was actually a tumor. We went to Zwanger Pesiri Radiology in Smithtown, where I had been when I broke my ankle in 5th grade (I reached for the top bar of the ladder of our three-story treehouse with both hands, missed with both hands, and fell onto a pile of logs). I had to get an IV put in the crook of my elbow so they could inject iodine into me so the tumor would show up. Now, I've never done well with needles. One time when having a tiny bit of blood drawn, I got all clammy, then passed out at the doctor's office. So that on top of my general "Oh my god there's something IN ME and it's a TUMOR" thoughts, I had the extreme jitters. The nurse who was doing my IV was all business until she looked up after asking a question and could read on my face how scared I was. Then she sat back, introduced herself, and explained the whole process, which did wonders for me. That didn't mean I watched her fix up the IV, mind you. Eeesh gross. (Note: at the time of this writing I have had about sixteen needles and have only been able to watch once. Read on for that one, it's special.)
I'd never had a CAT scan or anything like it, so I couldn't help but think what I always do in my completely not-made-for-science brain when encountering advanced technology: this shit is CRAZY. How does a small spinning cylinder take a picture of your insides? Who figured out how to manipulate lasers? What IS a laser? Who realized the body could take iodine safely when injected into their veins? (Although, as the nurse warned me: when iodine is in your bloodstream you can experience a strange taste in the mouth, warmness throughout the body, and the extremely pleasant sensation that you've peed your pants as an adult on a very expensive piece of machinery. All three happened. It was weird.)
My parents and I hadn't even made it home when we got the call from my doctor that it was, indeed, a tumor, and a biopsy would have to be performed. I remember hanging up, sitting in the passenger seat, and just crying. What if it wasn't benign? What if it was, and I'd have to have chest surgery? What WAS it? How did it get there? Was this actually happening?
It takes a while to wrap your head around news like that, because I at least had so many questions that couldn't be answered yet or at all--who has an answer as to why people get sick? or as to why anything that occurs in the world happens? People have philosophized over that--and will continue to do so--for years, and it's up to each of us individually to answer those questions in ways that allow us to make peace with the world. But at that moment, I was flailing.
But thank God, and I do every day, for my parents. In the car, in that moment, they both told me that whatever it was, we were going to take care of it together, and they would be there for me through any and everything. I can't even begin to imagine what it would be like to go through this without having parents like them. When we got home, my mom and I laid in her bed, where she encouraged me to say whatever what was on my mind, while my dad got right on the phone to schedule a biopsy.
My dad owns his own construction company, and he has apparently over the years done work for many doctors connected to Stony Brook Hospital. So he managed to work my CAT scan paperwork to the head of radiology at the hospital, and get me a biopsy scheduled with him for four days later. Stony Brook also told us that it was not one tumor, but three, located in the Mediastinum, which is an area in the chest that contains some major arteries, the heart, and a bunch of lymph nodes.
Because I have what I like to think of as an active imagination, I immediately pictured them slicing open my chest and taking a piece of the tumors that way. Once again, it was proven that I have no concept of how modern technology works; the biopsy would be done with a large needle that extracts small pieces of the tumor.
The day of the biopsy my mom and little brother Cody came with me. The doctors would be taking another CAT scan to pinpoint where in my chest to poke me, then giving me local anesthesia in that area so I wouldn't feel it, plus some sedation (nice) to "put me in twilight" but not knock me out. I was kind of hoping to BE knocked out (ignorance is bliss), but shrug. After numbing my chest, the doctor brings out a needle, which, I'm not kidding you, was about nine inches long. But, because of the sedation making me a little loopy, I was like, "Hey, cool needle, man."
I think the doc used about six different needles, and I watched as they filled up with blood and I guess tumor...stuff. It took about 45 minutes total, then they wheeled me out and I sucked down a black tea lemonade from Starbucks. (On Cody's account, the Stony Brook Hospital Starbucks is "really nice" if you're looking for a place to relax) and after another hour of observation, I went home.
Then: dun dun dun---the waiting period. Do I have cancer or do I not? By this time, it was April 5th, five days before my birthday. But I couldn't really think about celebrating until I knew. Although, thanks to my amazing friends and family, I did have a good birthday. I wouldn't say it goes down as BEST BIRTHDAY EVERRRR but it wasn't miserable. I mean, we had ice cream cake, and that ain't nothin to sneeze at.
During the wait, my dad contacted an oncologist he had worked for who he said was just the absolute nicest, kindest customer he'd ever had. He was able to read the medical jargon on the CAT scan reports to give us a better picture of what was really going on. I listened in on the phone as he told my dad where the tumors were, how big they were (one of them is like, six inches long) and what the next steps were. He even told my dad he would treat me for free because that's how much he respected my dad (tears, you can imagine, at that point) but to check on our insurance because the drugs used to treat cancer can cost zillions. But his main point was to wait it out, because there's always that chance it's not cancer.
But I had this feeling during that entire waiting period that it was. How could three somewhat large tumors be benign? All of them? In an area rife with lymph nodes? No way. Plus, although my mom and I had made a pact not to google anything so as not to jump to conclusions or read something incorrect, I had to google a bit. And night sweats, extreme full body itch, and respiratory problems were listed as symptoms of the hodge. So essentially, I prepared myself to hear that I had cancer, I think out of logic just as much as an act of self preservation. So on April 11, the day after my birthday, after over a week of waiting, when my dad told me it was the hodge, I didn't freak out. I was with Sara, who gave me a hug as I took a few shattered breaths, but I didn't cry really. I think we, at least my close family, had just known.
Additionally softening the blow, was what I had said before--if you get lymphoma, you hope it's the hodge. For some reason, it's extremely curable. The success rate for any stage is around 90%, which is just unfathomably encouraging. It's also really common in young people. For every three people I tell, one of them says, "Oh yeah, I had a friend who had it last year, and he's doing great!" So to hear it was the hodge was actually the best news we could hope for.
So yes, I thought, I would need chemo, I would sublet my brooklyn room and beat this whole thing in a couple months and move back in by mid-summer. That, however, was a naive concept--on a phone call with Dr. Caruso, my dad's customer, I learned chemo could take as long as eight months. I feel silly now for thinking it would be quicker, but I can't tell you how much of a shock it was to hear eight months. EIGHT MONTHS. Three quarters of a year. That sent me into a schlump that lasted almost a full day, where I couldn't do a thing but sleep. But then, lying in bed, I thought, this is what it's going to take to get better. Besides, what else do I have going on? (I had already quit my terribly exciting job and decided to move home so I was pretty much at liberty to concentrate on getting better, which is a gigantic privilege few people have.) That line of thinking combined with the surprise visit of four of my mom's eight siblings (I know) with the gift of an Ipad (I can't even say how surprised and touched I was) knocked some sense into me.
And more good news came when we found out Dr. Caruso, the oncologist who my dad had been speaking with, was under our insurance. I had my first appointment with him about four days ago, and my parents and I left feeling like we were in the absolute best of hands. First off, he told us the hodge is stage uno, my friends, which means it probably only developed a few months ago, and we caught it early. So in retrospect, I'm glad I spent the winter coughing and tearing at my skin and sweating through my pajamas. Secondly, Dr. C just gives off this incredibly comforting vibe, but it's coupled with his extremely impressive breadth of medical knowledge. He was able to answer each and every question we have, plus explain everything in a way that was easy to take in and alleviate a lot of the anxiety we all had.
So treatment is chemo, which I mean, we all know generally sucks. You feel sick, you lose your hair (HOW do you keep stuff out of your eyes without eyelashes?!) you get super fatigued. My dad's secretary and friend of the family, who is a breast cancer survivor and went through the same kind of chemo I'll be getting, has been around every step of the way to answer questions about it. She showed me the scar on her chest where they installed a port for the chemo drugs to go in through. They don't do it through IV anymore, because the drugs can severely damage your arm if the IV isn't inserted properly, plus the port makes it somehow less uncomfortable.
Dr. C. said it gets installed under the skin on the flat part of my chest under my collarbone. You won't be able to see it, but it will be raised under the skin, almost as if a nickel was sitting on my chest. Right underneath the skin, there are four entry prongs, where whatever they administer the chemo with attaches to. Treatments for me will be once every two weeks, and will last between four to six months he thinks. I was going to try and go back to Sunken Meadow, where I worked last summer (which incidentally contributed to me having the summer of a high schooler, which was awesome), but my parents graciously offered to let me freeload off them under the conditions I write (schwing! motivation!) and do something to better myself intellectually and emotionally while undergoing treatment. There will be about ten days a month where I will feel fine, so I can't see this being a problem in the slightest.
Oh, and a huge (but small on the grand scheme) concern of mine was that I wouldn't be able to go in the sun or go swimming with the port, but it turns out I can totes go to the beach when I'm feeling well and have a typical, sun-drenched summer (just not on the day of or two-three days following treatment.) I can't wait to get to Robert Moses.
Another big/small concern is whether or not I'll be able to get to Bonnaroo. I told both my parents that if nothing else all summer, I want to be able to get there, so if there was a way to schedule the beginning of chemo so I would be feeling well on the week of Roo, I wanted to do that, and they agreed. We don't know the schedule yet, because we don't know exactly when chemo will begin. It's a matter of a couple weeks, but I have to accomplish four tasks beforehand:
1. A pulmonary test where they do a sonogram of my heart to see if there is fluid around it, which I had yesterday and left my chest full of goop from the sonogram ...wand? but allowed me to hear what blood moving through my arteries sounds like. Not something you hear every day.
2. A lung test to see what my lungs can handle (they better be badass, there's a reason I don't smoke cigarettes!)
3. A bone marrow biopsy which raaaaaaaaar is not going to be pleasant. Dr. C was vacillating on whether or not to test if the hodge was in the bone marrow, because the test so frequently shows up negative that many doctors have stopped even doing it. But he says the symptoms I exhibit--the sweating, the itching, the cough--are enough to make him want to do it. Thing is, he said it's "not fun" which is doctor lingo for "it's going to hurt." Apparently it's a needle (of course it is) that's inserted into the hip bone and extracts the marrow, which is the painful part because that marrow don't wanna leave that bone, girl. But it's better to know than not. Dr. C set it up so it will happen the same day the port gets installed, so I will be in the same "twilight" as I was during the biopsy.
4. About a week ago, my mom brought up something that had literally not even floated through my head throughout this entire time--freezing eggs to make sure I would be able to have kids after all this since there's a chance chemo can cause infertility. I was totally like, WOAH, good on you, mom, because like I said, it wasn't something I had even an inkling about. And the notion of having that back up plan really appealed to us all because that "what if" is a BIG what if, if you want to have kids some day. And recently, after years of thinking I didn't want kids, I began to re-think that and decide that yeah, I want that option. Dr. C referred us to a doctor who works in the same medical park, and we went just to hear what the options were.
My biggest concern was cost. I do thankfully have insurance, but when we went to see the doctor, we learned that the whole thing--controlling the ovulatory process, removing the eggs, freezing and holding them--wasn't covered, not even a smidgen, but that for people who are sick (I hate calling myself sick, but eh) they cut the cost in half and try to get all the medicine donated. In the end, the price they gave us for the procedure was 3,600, which is almost half.
After the first appointment, I sat in the waiting room with my mom and just cried. I had had no sleep the night before, and you do NOT want to see me when that is the case. Secondly, it's just overwhelming to be thinking about the future when there's other issues in the present that seem so much more important. Thirdly, here is another financial cost to my parents that I actually had the option of preventing, and the guilt of that made me feel so horribly torn. But my mom rubbed my back and assured me that she and dad would do anything for me through this, (again, lucky, lucky girl) and that this was a positive thing we could do during a time when there's a lot of negativity around. (Plus, as Cody joked, she really wants grandkids).
So the next day, with a clearer head and positive attitude, we went back to the egg doctor and told her we wanted to proceed. The way it works is this: they give you medicine to make your eggs mature, given in the form of a shot that looks like an epi-pen that you administer YOURSELF. I had to do an "AROO?" a la Scooby Doo (or am I thinking of Will Smith?) when I heard that because if I haven't iterated it enough, girl don't like needles. But they taught us how to do it, gave us a dvd and a big packet of instructions, and sent us on our way. I was incredibly nervous we'd mess up, but my dad, ever the calm one, had us watch the dvd then we did the shot 1,2,3. I get one every night for four nights, then I go back Monday for blood work and a sonogram (honestly, never thought I'd be doing any of this at 24). If all goes well, the eggs should be ready to take out in about a week or so. Then they get put on ice and go into Encino Man hibernation till I want them I guess. THEN we can begin chemo.
But that's where I'm at now. I started this blog for a bunch of reasons--one was to get back to writing. How could I not, with such an obvious subject matter and a big ol' bundle of emotions and racing thoughts that are constantly in flux? Secondly, (and this is why things were and will continue to be as detailed as I can manage) this is getting information out there both to my friends and fam and possibly, if someone stumbles onto this blog, a young person who may be going through the same thing. I also just want to document this so I can look back and have a written record of this when this is all over.
There have been a bunch of silver linings to this whole deal. First and foremost--people have been so incredibly kind to me. Not just my friends and family (who if I haven't said it enough, I can't be more thankful for) but complete strangers. Friends of friends who have had cancer have written me emails with their phone numbers, saying call any time with any questions. A roofer my dad occasionally (occasionally!) works with wrote me a really lovely letter saying his little brother had the hodge, and he's available for any questions. People I don't even know have been praying for me (the religious aspect of this whole thing needs another post entirely, because yes, this first one is basically a novel). I've gotten in touch with friends I haven't spoken to in a long time. It has just opened my eyes to a certain connectivity of us all that isn't usually accessed unless under duress, which is a shame, but a pretty amazing thing to witness. I'm also beginning to look at life totally different and can only imagine that my eyes will continue to open and expand until I basically look like ET.
Anddddd I think I've gotten enough into one post that the subsequent ones won't be nearly as long and saturated as this one. But I'm pretty sure that of the two or three blogs I've tried, I'll stick with this one.
