As per usual, it’s been months since I’ve posted anything. To be quite honest, as much as I’ve experienced over the months most of it didn’t/doesn’t seem particularly noteworthy since this blog focuses mostly on my health when it’s in the shitter and then my ensuing battle as I strive to recover from Life trying to drown me in repeated shitshows. That said, there will (eventually 🙄) be a post about that one time a couple months ago that I went and got pneumonia and ended up hospitalized for a week (spoiler alert!) and probably some mention of having my PICC line removed (RIP Pat and Kelly– although they’re actually hanging out in a bag in my room right now) but for now, I want to focus on something that I haven’t really felt or thought about in quite some time– Survivor’s Guilt (or at least some adaptation of it– because Lord knows I’m a zebra and can’t fit neatly into any given category).
I don’t entirely know where to begin on the subject, simply because I have so much on my mind. So let’s see where this goes; bear with me.
It’s tragic when anyone loses their life to cancer or the resulting complications thereof. I feel like I’m now part of a special group of people that knows the suffering and hardship of diagnoses’ and resulting treatment and all the potholes and roadblocks along the road to recovery. I know, on several different levels, what it’s like to go from normal or “mostly normal” just to have the rug pulled out from under my feet again; Life staring down at me with a sadistic, twisted smile, a cruel humor glinting in its eyes.
I’ve been the zebra– the outlier, the “special case”. I’ve knocked on Death’s door more times than most people my age… but even so, here I am. Through all that I’ve been dealt thus far in my 23 years of life– here I am.
I was 21 when this wild ride began, and here I am, just over 2 years from my initial diagnosis. I’ve woken up everyday since thankful to see another morning, to smell my favorite smells, taste my favorite tastes, feel my favorite things, hear my favorite sounds, see my favorite sights. I find so much beauty in the smallest things, so much happiness in the tiniest moment. I get to spend time with my friends and family, I get to go on trips and see the world.
But while I’ve had some shitty hands dealt to me, here I am.
And others aren’t.
This fact pains me for different reasons. The people we lose from cancer, whatever type it may be, no longer have the same blessings that I do. They don’t get to experience new mornings, their favorite senses. They don’t get to spend time with their family and friends, or partake in their hobbies. But more than that, I think I’ve come to realize that it pains me because in them, I see myself. I see close calls, and possibly (though hopefully not!) impending doom.
But, even more than that is this; why am I still here.
This is probably getting a bit out of order, or repetitive, but it’s tough trying to keep up with what my brain is trying to convey. My fingers don’t move quickly enough to keep up with the ever changing topics and emotions. But even so, I’ll continue.
I am not and have never been suicidal over the thought, and for that I am incredibly grateful. But I definitely do feel a great deal of guilt at times.
When I hear that a child has lost their battle with cancer, is shakes me to my core. Babies, toddlers, adolescents… the population that is just coming into being, that is just beginning to figure out the world, that dreams of growing up and becoming an adult; their dreams are dashed almost before they could entirely evolve in the first place.
At 23 I’ve experienced more than some kids ever will, and I haven’t even scratched the surface of experiencing life, of accomplishing my goals, of growing up. It breaks my heart to think that they lost their battles, that their families have lost them. I cannot begin to fathom that level of pain, of a parent losing a child, or a child losing a sibling. Of a friend losing a friend.
You always hear people say that life isn’t fair– you’re god damn right it’s not. Being exposed to the situations that I’ve been in, to the people who go through similar trials and tribulations like mine, has shed light on just how glaringly unfair life can be.
I continue to struggle to find a direction for where I’m trying to take this post– perhaps it’s just a rant to clear my mind some. Or maybe I’m dragging my feel getting to the reason behind this particular post finally showing up (its long overdue, if you ask me).
When I was hospitalized in February after I relapsed, my family and I came into contact with a delightful young woman my age and her family. She was just a couple rooms down the hall, and we had talked to each other a few times. She was radiant– looked lively and happy despite her diagnosis, which, at the time, I was unaware of how serious it was. She ended up getting discharged before me, but when I came back with pneumonia she had been admitted again (this I heard from my parents, as my memory of being in with pneumonia is cloudy and unclear– I thought I was only there for three days, but it turned out I had been in for a week).
I remember talking to her about my journey and giving some advice as well as offering to keep in touch if ever she needed or wanted someone to talk to about anything. We didn’t keep in touch, unfortunately, but instead parted ways to continue our own journeys to recovery.
Months went by (obviously, because here we are in fucking October!) and, as far as my journey goes, things improved. My fungal infection cleared up, I got my PICC line removed… my counts stabilized and I came off a lot of the medications I had been on. Now, (hopefully) quick side note– I don’t live in constant fear of relapsing, but I am anxious about it… how could I not be? It’s a weird thought knowing that it might come back, or it might not. And I hope and pray that it doesn’t come back– that will be my wish when I see a shooting star, when I blow a dandelion, when I blow out the candles on my birthday cake, any chance I get. I start getting more anxious as time passes, as things start to settle and I return to normal. There’s a comfort in normal. A happiness. But for me, now, there is also a lurking shadow of uncertainty. Thinking about it makes my hands tremble. My anxiety tells me “stop writing about it or else it’ll come back”– but I also realize I can’t let me fears control me for the remainder of my days. I can’t limit myself. If anything, I have to live louder, love deeper… feel and experience things like I might not always have the chance to.
Alright, alright, back to what I was getting at (hopefully!).
I just had a clinic visit today– my first in probably a month. In that monthish, I have been fortunate enough to travel to Alaska and Colorado (having driven to Alaska, returned home for a day or two and then flown to Colorado). I made a deal with myself that I would enjoy the trips fully and wouldn’t stress about the thought of labs or things like that until I returned home. Well, that planned worked pretty well, until I got a cold before Colorado and started to worry just a tad. But once I got home, the flood gates of emotion tumbled down and stress, anxiety and fear became a dark shadow bearing down on me. How did I get that bruise?? I don’t remember hitting anything…! Am I out of breath from doing those stairs?? Should I be out of breath from running those stairs?? Oh shit, I cut myself while chopping onions… are fingers supposed to bleed this much?? (I probably didn’t help matters by squeezing the wound relentlessly, trying to determine if it was normal or if my platelets were failing me), It’s the middle of the afternoon and I just yawned– why am I tired?? Is my hemoglobin dropping??
Inevitably, I would have to get labs done and return to clinic eventually. I still had a rumbling cough and a runny nose, so decided to postpone my visit until my cold had cleared up more (that’s the coward’s phrase for “I just was too damn scared to go in, so putting it off a week seemed like a good idea”).
Well, as could be expected, another week passed and I finally had to go in. Putting it off a week had allowed for my cold to almost entirely clear up which was great, but it had also given me a week to sit in my fear and anxiety, wilting away over the thought that it might be back. (Lesson from this? Just rip the fucking bandaid off. You’d think I’d know this by now!)
The results came back– my counts were even better than they had been a month ago. Everything was beautiful– almost perfect– incredible by Katie-standards. No blasts. Platelets over 200. Hemoglobin over 13… like, what the hell??? Fucking excellent labs. Not to mention my CT scans came back (checking out the “fungal” spots and what not to determine their size and all that jazz) and showed that after six weeks without antifungal the spots had continued to decrease in both size and quantity– even more excellent news!!
But with all this wonderful news about my health came the information that the girl just a few rooms down from mine, had lost her battle and passed away about a month ago.
As relieved as I was that all my counts and scans were good, I felt sick to my stomach that the same could not be said about her.
There’s a heaviness in my heart today, a definite reminder that life isn’t fair and that people are taken from this world too soon. There’s a weight on my shoulders that I sit here, listening to crickets and my mom work in the yard, the warm autumn sun casting a golden glow across the green yard and changing leaves. I can’t help but wonder, did she love fall as much as I do? Who and what did she leave behind? Who is missing her? Undoubtedly there is a great population feeling her absence.
It’s thoughts and events like this that encourage me to live life to the fullest, to accomplish my goals, to live my dreams and be who and what I want to be. I strive to spread awareness for different cancers and research for treatment. I want people to know that these people existed, that their lives mattered and although I may not have known them well or at all, there were plenty of people who were impacted by them.
So while I may question while I’m still alive and others aren’t, and I feel a deep guilt that I have been lucky enough to see so many mornings, I am beyond grateful that I am still here, for however long. It’s because of that recurring guilt that I am able to truly appreciate the time that I’m given– all the things I’m able to experience. I know how fine a line there is between this life and the next, and I hope that I never lose the ability to find the joy in the smallest moments. That I never take this life for granted.