First of all, let me preface this whole entire blog by saying that I have a pretty good memory. It comes in handy when the doctors and nurses ask questions about medications and things like that and my mom can’t remember. We sort of work together as one brain during these conversations. However, I must admit that I didn’t listen to those around me when they all said I should be journaling or taking notes about my experiences. That’s where my parents come in. Both my mom and my dad had their own forms of journaling going – my mom occasionally posting updates on Carepages and Facebook, while my dad meticulously wrote notes in his phone (about every. single. thing). So yeah, I’m using their notes of the past days to jog my memories — not that I have amnesia or anything, but it helps. It may be sort of cheating, but I think of it more as a “using Wikipedia for hints while writing a paper” kind of a cheating. You still do the work. So shout out to my parents for their help – you rock, never change. And Jules, I’m sorry for making fun of you for typing away at your phone every single day…well, I’m a little sorry. ❤
I have to admit I don’t remember how my first day as a cancer patient started, mostly because I was exhausted and still kind of mentally out of it. But I do remember waking up in my room (it was actually all a dream…just kidding) on the oncology floor, basically unable to move because my right hip felt like I’d been run down by a Mack Truck. Imagine the feeling you get when you accidentally bump your hip on the corner of a counter. Now multiply by 10. Yeah, that was my first bone marrow biopsy. Basically, while I was under anesthesia in the operating room, the doctor stuck a big needle (I’m assuming it’s big, I’ve never actually seen it because I’ve been knocked out every time) right through my skin and muscle and into my hip bone to extract a sample of my liquid bone marrow. Add that to the other needles that went into my spine to both take a sample of spinal fluid and inject chemotherapy into the remaining spinal fluid, and you can probably assume that I was a very sore and sad sight. That was my first encounter with chemo.
It was explained that the bone marrow sample would be tested to see exactly what kind of Leukemia I had (besides already knowing I had the “bad kind”) and other genetic things that they needed to figure out. The spinal tap was done to test my spinal fluid to see if any cancerous cells had made their way into my spine (which would be very bad), and the chemo injected was a precaution to start to kill the cancer cells right away in case some little deadly buggers had gotten in. Luckily, they were able to quickly determine that same day that, although there was a white blood cell found in my spinal fluid, it was not cancerous (10 points for
Gryffindor Jillian)! But I would still get the chemo in my spine each time I had a bone marrow biopsy as a precaution.
And so I laid there perfectly still so as not to bother my hip and my back, and tried to get used to the new piece of hardware sticking out of my arm that I had also gotten in surgery (busy busy day for a girl who slept through everything). For those of you who have had blood drawn, or have had an IV placed, you know how annoying it is to have that little thing sticking out of your elbow or wrist for that short period of time. Now imagine that thing sticking out of your bicep, except this thing now splits into two cords and those cords are connected to an IV pole that you’re not allowed to be unconnected from (I have a serious love-hate relationship with that pole to be honest), and that’s the basics behind my PICC line. Essentially, the PICC line (peripherally inserted central catheter) is a super long catheter that’s entered in through the largest vein in your arm (hence the bicep) and somehow weaved up through your arm, to your shoulder, and lets out in a large vein in your chest. All this is inside you by the way, you just see the little cords sticking out of your arm; this is how they inject all of the chemo, medicines, and fluids you may need. So that was fun: learning how to sleep without rolling over and subsequently yanking out my PICC.
My lack of mobility (and laziness from post-anesthesia fatigue) gave me plenty of time to think about my current situation and how I’d ended up there. Technically I did not start feeling major symptoms until Mother’s Day weekend (nice gift for mom), but I realized that I had started to feel a little more fatigued and “off” ever since I donated blood at a blood drive and almost passed out walking to class afterwards. Needless to say I missed the lecture that day.
Oh my god, I thought. The American Red Cross has my blood. My blood that now has cancer. What if they give it to someone, and that person gets Leukemia too? How many people does that blood go to? What if I start an epidemic? Well that’s it, I concluded, I’m officially Patient Zero – responsible for the infection of at least ten people.
What can I say? I’m a worrier. Eventually I chilled out enough to realize that the blood donations get tested extensively (and now I know for a fact because goodness it can take a long time to get some blood around here), so the fictional victims were probably okay.
But if there’s ever a sudden influx of patients in one particular area, I apologize in advance.