Fear

Fear & anxiety tend to go hand-in-hand for me.

I mentioned in my last post about how even writing down certain things causes me to feel as though I’ll lose all I’ve gained so far, and that the AML will come back simply because I chose to shed light on that aspect of my fears.

My heart rate increases, and my chest tightens. Often, my stomach trembles and my hands quickly follow suit. I try, and am often momentarily successful, at telling myself that whatever happens, happens and it has nothing to do with what I chose to write down, what I chose to do, where I went, or any other action I made.

Writing about it makes it seem silly— how can things that I know have no correlation  impact me so severely? I’m sitting here, stomach and hands trembling, trying to figure out where to go from here, a voice in my head softly pleading for me to stop and not go any further… but that’s not going to happen. Not this time.

The other day I read an article from LLS (The Leukemia and Lymphoma Society) about recent advancements in blood cancer treatments, especially for AML. It was incredible, and I was feeling so confident about where I am… until I read the statistic that the 5 year survival rate for AML patients was less than 30%.

My heart sank like lead into the pit of my instantaneously sour stomach.

I knew, and know, that every case is different— that every patient and story is different— but I know that I’m an AML patient… and my heart and confidence was absolutely shattered by reading that.

That night I cried more than I have in a long while, and I didn’t manage to fall asleep until after 4am— my mind whirling with thoughts, worries, hopes, dreams…

The thought of the AML relapsing is not constantly at the forefront of my mind, but it’s definitely always present— hiding in the darkness and waiting for a moment of weakness to break through my barriers of confidence and leave my mind whirling with a hurricane of thoughts that is difficult to tame.

Like I mentioned before, my anxiety flares up and tries to convince me that if I do this or that, then I’m welcoming the AML back and that I can keep it at bay if I avoid doing whatever it is that my brain has convinced me is the “trigger” for allowing it to return.

Perhaps some of the most prominent examples of this are as follows:

1) before I was diagnosed I drank a lot of green tea, then I got AML. I didn’t drink it for months, and one day decided to again. Several weeks later, I relapsed. I haven’t consumed or used green tea in any form since, and I don’t intend to anytime soon.

2) before relapsing, I had made plans to visit Tim in Oklahoma. Ten days before, I relapsed. Now I don’t count down the days to things, and my anxiety amplifies horrendously before I leave for big trips/as they get closer.

3) several days before relapsing, I put my hair in a teeny ponytail for the first time. I did something similar a few days ago just to “stick it to the man” if you will, but it took me a lot of time to build up the courage to do it.

All of that seems so fucking dumb when I read it. I know that none of that caused any of what I have gone through. That if I do that stuff again, or act against my anxiety in any way, it’s not going to come back just to spite me. And yet I continue to act like that’s exactly what’s going to happen.

Well fuck that.

Fuck the fear. Fuck the statistics. Fuck the anxiety. Fuck the cancer. Fuck it all.

The anxiety is still going to be there, sure. But god damn it, the mind is such a powerful tool I may as well make an effort to use it positively. Sometimes that’s easier said than done, because I know I tend to hear one bit of bad news and it becomes a black speck in the depths of my mind that slowly spreads and grows— stagnating into a negative mold that threatens all I’ve gained with my positivity.

Wanna know some more of my irrational anxiety-induced fears (my insides are vibrating with nerves, hands shaking, the voice in my head still pleading for me not to do this. But fuck that!)

I’m afraid that if I go to places I haven’t been since relapsing that I’ll relapse again. I’m afraid that if people get upset with me that I’ll relapse. I’m afraid to go in for lab draws and biopsies because I’m afraid the AML will come back and I don’t know what the fuck I’ll do if it does. I’m afraid of accidentally forgetting my medications, because if I do, I’ll relapse. I’m afraid that I’ve come this far and that I’ll become just another part of that statistic. I’m afraid that if it comes back it’ll win this time. I’m afraid that if it comes back no treatment will work. I’m afraid it’ll keep coming back. I’m afraid I’ll never get to grow my hair out long again. I’m afraid that when I️ go to a horse barn tomorrow that I️ haven’t been to since before I️ relapsed… That I’ll relapse. I’m afraid of every bruise I get. I’m afraid over every cough I have. I’m afraid of living life for myself and doing what makes me happy. I’m afraid of every ache I have. I’m afraid of every time I start spotting. I’m afraid of working out seriously because last time I got back into fitness, I relapsed. I’m afraid I’ll never have the chance to get married. I’m afraid I’m wasting my life being afraid. I’m afraid that I’ll succumb to the darkness that lurks in my mind. I’m afraid if I disobey the warnings in my head that I’ll pay for it.

I’m afraid that by publishing any of this that— you guessed it— it’ll come back.

And that’s exactly why I have to publish it. In this moment— in this powerful moment— I’m not afraid. I’m angry. Angry that I let these thoughts have so much power and control over me. But now, even if this is just a fleeting moment, it’s real.

And I’m free.

I know I’m still going to have these worrisome thoughts, but my goal of posting this is that I will stop living in this fear and face it instead of succumbing to it and giving it so much control over me and my happiness.

Fuck that shit.

I believe that I’ve gotten to where I am in large part because of my mindset. I know that after reading all these fears and negative thoughts you’re probably like “wow, yeah I’m sure you’ve made it this far after nearly 2 years because of your glorious mindset”, but in all actuality I tend to be an exceptionally optimistic person. I highly doubt that I’d have made it this far if I wasn’t… thought at the end of the day I’m human and I doubt it’s possible to be positive indefinitely. I think it’s funny that, after all I’ve been through I can be so mentally strong, and yet so incredibly weak at the same time.

My hope is that by refusing to yield to these thoughts that demanded to stay buried inside my head I will give myself strength that I’ve been lacking lately, that I can really make myself believe that by refusing to give my anxiety power that I can be at peace with the darkness in my mind.

Of course, it won’t be gone. But I don’t need it to be.

Here’s to making peace with the darkness. Here’s to focusing on spending energy on positive thoughts. Here’s to giving my mind the power it needs to thrive.

Thoughts About Things and Stuff

Well, I’ve been doing a lot of thinking recently… *insert snarky comment here*

I think it’s one thing to have been diagnosed and fought cancer once, and an entirely different situation to have to face it again. Both of these periods of time have taught me a great deal, and very different lessons.

This time around, I’m finding that, holy shit is life short. Like, seriously short. And it’s definitely not a guranteed thing… it’s constantly at risk of ending… like a candle flame being snuffed out by the slightest breeze.

Most of us are lucky, and don’t really need to think about how fragile life is; living almost ignorant of the fact that every day, every minute, every second… could be the last.

The more I am faced with the lurking concept of death, the more I revisit what I want to accomplish in this life, and what I’m willing to do or give up to achieve what I want. Recently, the biggest thing I’ve been mulling over in my mind is that of returning to school.

Now, don’t get me wrong. I fucking love school. Let me repeat that with a little more gusto– I FUCKING LOVE SCHOOL. I love everything about it (except maybe the few inevitable douchers that dwell in all classes). I love the assignments. I love the papers. I love the tests. But more than anything, I LOVE the learning. Absolutely love it.

Perhaps the only reason at the moment that deters me from advancing 100% forward with schooling is the fact that I’ve kind of been through some shit, if you haven’t already realized that.

I’ve been through a lot of shit. I’ve spent a lot of time in the hospital, and as a result missed out on a lot of things that I’ve wanted to do, attend, accomplish… and every single time I miss something because of the battles I’m currently facing, it’s as hard as if it were the first time all over again (that’s what she said!). 

Life is short. Life is fragile.

I want to live. The idea of spending more years in school seems less and less appealing as the days tick by. I think I’m starting to really see that I want to have a job that makes me feel like I’m helping others, like I’m fulfilling some aspect of my life. In this regard, I’ve found that sharing my story and helping others in similar situations absolutely elevates me to new highs. I adore sharing my stories; my victories, my struggles, my thoughts, my experiences. I hope that in doing so I not only raise awareness for blood cancers, but also shed light on different elements of life. I truly just want to make a difference and impact people’s lives with the experiences I’ve undergone and continue to endure.

If I were to not go back to school, I do have plans and ideas as to what I’ll do instead; and living in my parent’s basement is not on that list. The basement is already taken, since that’s where Mickey’s (my older brother) room is 😉 (Mickey if you’re reading this I love you and you know I just have to tease you any chance I get! Haha).

Currently, I would love very much to get a job working for the Leukemia and Lymphoma Society or a similar group that raises awareness for blood cancers. Along with that, I would enjoy being able to help newly diagnosed people through their journey and be able to provide my experience in an attempt to help them. Basically, I just want to help and make a difference for people who are going through what I have and what I still am going through. Fighting a blood cancer, going through a transplant, relapsing… all of those experiences have given me a special set of knowledge that I think a lot of people could benefit from. Along with that, though, the generalized idea of adjusting to a new normal (which, I’ve come to learn, is not something that changes once– “normal” is a constantly evolving idea) is a more relevant idea to a wider group of people. I’m fairly confident that if you’re alive your idea of “normal” has changed at least once in your life, and that most likely won’t be the last time, either.

I’d like to be an example that shit can go way south. And it can go south really quickly, and several times and in several ways… but just because that happens, doesn’t mean that you should give up, abandon hope, stop fighting, or stop seeing the beauty and humor in the world. For every shitty experience that I have been through, I have found even more reasons to smile and to be thankful for life. I have met exceptional human beings. My life has changed drastically, and as I’ve said before, I wouldn’t change any of it for the world.

I’d like to have more opportunities to speak about my experiences and my crazy, bizarre story. Me, the type of person who could hardly raise my hand to ask a question in class, now loves to stand in front of a room of strangers and talk, answer questions, express my thoughts and feelings.

I want to support, encourage and motivate people– not just those who are fighting cancer, but anyone. Everyone. I have been so incredibly fortunate to be surrounded by such a massive support system that I want to be part of that for someone else, because the thought of having to go through what I’ve been through alone tells me that my story, although not over yet, would have turned out significantly different.

Anyway, that’s where I’m at with things in that regard currently. Much like the idea of “normal”, I’m sure some things might change… but I have a feeling that as far as what I want to do and achieve in life are concerned, they will stay pretty damn similar.

Over-n-Out!

Survivor’s Guilt

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.

23 years.

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.

 

 

 

There’s a Fungus Among Us (AKA The Time I Almost Turned into a Toadstool)

Yet again it’s been a good while since I’ve written. Whoops! Sometimes ya just get caught up with livin’, y’know?

This post is being written from my home away from home, my most cherished place on earth, my family’s cottage on Five Mile Point. Although I’m hooked up to hydration at the moment, I despise it a little bit less because my soul is so happy to be up here. The sun is shining on the mighty Lake Superior, whose waves aren’t much more than little ridges across the massive blue expanse. The leaves and needles of trees are gently swaying in the soft breeze, and my heart is happy! There is no place on this planet I would rather be than right here. I’ve been coming here since before I was born, and I wouldn’t have it any other way. This is my happy place.

Now that I’ve painted a little picture of my paradise, I’ll delve into the meaning of this post’s title.

Remember that time it was discovered that I had a fungal infection called Fusarium? (I think that’s how you spell it. But frankly I don’t really give a shit, so moving on!) WELL, that shit was all up in my nose, spots of it were on my legs, and also in my lungs and kidneys. Good news is that the antifungal they’re giving me seems to be working, but still some spots remain.

What was in my nose felt much like a massive wad of congealed boogers, except for the fact that it smelled like actual decay and, well, that it was fungus.

Initially, this glob was fused to my septum, which was quite painful. Any amount of pressure to my nose would make my eyes water with discomfort. But as time passed, it slowly began to loosen up.

I was doing the anti-fungal medication at home, and it was clear that it was making a difference because it continued to loosen more and more, to the point that I could push it from one nostril almost entirely into the other. I tried (and failed) to pull it out, since somewhere along the line it was anchored in my schnozz.

Now, fun fact about me, I have been known to have pretty horrible self-control.

That said, I probably shouldn’t have been shoving my fingers up my nose-holes, but god DAMN it did I want to pull that shit out of there! As the days passed, it got more and more obnoxious, and my self-control grew worse. Oh, and did I mention the smell? It literally smelled like death. Y’know that smell on hot summer days when you’re driving with the windows down and pass some roadkill that had been baking in the sun for hours? Yeah, imagine that, in your nose, 24/7. Talk about repulsive to the max.

One day, perhaps two weeks ago, I took a shower and sat in the heat until all the hot water was gone, mostly because it felt fucking awesome, but also because I wanted to see if the moisture would loosen the boogers of death from my suffering nasal cavity.

I again poked and prodded around with my fingers, and managed to scrape away some softened fungus from the hard base, but the smell (and mothership) remained.

Now, remember when I mentioned my lack of self-control? And how I probably shouldn’t have been shoving my fingers in my nose? Yeah, well, I definitely shouldn’t have done what I did next.

When fingers fail, call for back-up. I like to call the back-up by their real names; Mr. Tweezer and Ms. Scissors. (Yeahhhh. But what the hell, everything worked out fine!).

I cut a couple teeny bits of hard death-booger off, and finally decided I’d had enough of this bullshit. I finagled the tweezers into my nose, and managed to snag some part of it. Slowly, I began to pull the tweezers out. I figured if it hurt I’d stop pulling and try a new method of eviction, but as I pulled I felt no discomfort whatsoever. Suddenly, I felt something massive dislodge and begin to slide out of my nose like a huge slug.

In honesty this entire eviction took maybe 10 seconds. And when it was done, I stared at my prize in horrified wonder.

I’d basically pulled a mushroom out of my nostril.

We’re talking an almost silver-dollar sized fungus-booger hybrid. A Funger. A Boogus. Whatever you want to call it, it was fucking horrifying. (Note: He was officially named Elmer, and was thrown away by a disappointingly un-amazed group of medical professionals.)

The fungus actually ate through part of my septum, leaving me with a good sized hole. So now I guess I don’t have to pay to get my nose pierced!

Anyway, moral of that story is don’t get a fungal infection.

RIP Elmer ❤

Hello, nose rings!

Updates!

I have all these grand intentions of being on top of posts full of updates and things of that nature, but for some reason I’m just shit at that. So I have nine partially completed posts, but I just never got around to finishing them, I’ve decided I don’t feel they’re adequate just yet, or some other reason that prevents me from posting them.

And so, as you’re all pretty used to by now, here comes a probably lengthy tale of the events that have transpired since my last post.. or at least as much as I can currently recall… you know how that goes!

Perhaps the biggest occurance (hang with me on this one) was several weeks ago. I was diagnosed with a fungal infection which severely threw off the plans for transplant because along with the antifungal I was receiving, an immune system of any sort was better than my neutropenic one. Extra help to battle the new enemy was required.

During this time, I underwent another bone marrow biopsy to see where the leukemia was at.

Side note: I remember feeling quite well and confident on this day. Down in the OR pre-op several people made mention of it being a good day, to which I wholeheartedly agreed. I felt good about what the results of my biopsy would be…

When the results came back and one of our favorite Fellows came to see us, my already fucked-up, mixed-up world was sent into one of the most shocking and confusing tailspins I hope to ever experience. He very kindly and clearly explained to me and my parents that the AML was still present, and that because of that and the fungal infection my treatment options were incredibly limited– non-existent. Because of that, it was thought that I should be discharged and spend my remaining months enjoying life and doing the things that I’ve always wanted to do.

I feel like I’ve faced death a lot in these past two years. But never have I felt that it was lurking so close… hiding in the shadows just barely out of reach. And now here I was, sitting in a hospital bed with my parents, trying to hold back tears as he spoke. The longer it went on, the more the tears welled in my eyes, first threatening to spill over before they finally cascaded down my cheeks. I’m pretty good at silent crying when I need to be.

Time passed as my parents and I sat together, all of us soaking up the news, crying and in a general state of “what the fuck?!“. After we had a good cry, I asked for some privacy so that I could make some calls and mull the news over in my mind.

I’ll tell you something right now, it’s an odd feeling, being told you’re dying. That you have months to live. That all the things you’ve dreamed of achieving, of living to see, to experiencing will most likely not happen. That your family and friends will keep living, and that you won’t be there to see them grow and live their lives, accomplish goals. It broke my heart. Initially for me and the loss of all the things I wouldn’t get to experience. But as I thought about it more it broke for my family and my friends, for the times I wouldn’t be able to share with them. The thought quite honestly caused me to feel like I was letting everyone down. What an asshole I was! To have fought so hard for so long and then just go ahead and die. What the fuck.

I had called Tim and asked him to FaceTime me when he had a chance, but I requested he do it when he got back to his apartment, unsure of how the news would be taken. During that time, the Fellow returned, followed closely by my parents. He looked at me and more or less said, “I don’t know what you did in the last 10 minutes… but your bone marrow is clear. Someone signed off on the results before the final read came through, and it’s clear of leukemic blasts.” This news was understandably shocking and thrilling. I still had/have a lot of work ahead of me, but the fact that there were no blasts opened up my options on treatments for the fungal infection, and as soon as that was resolved we could continue with a plan for keeping the AML at bay, and ultimately transplant.

Thinking about it, I am so thankful that the news occurred in the order that it did. I can’t imagine hearing any of that the other way around. And I definitely can’t imagine being in the Fellow’s position– having to share such awful news and basically come back and say “jk you’re not as fucked as previously thought!”.

And another thing is, holy shit did he do an excellent job breaking the initial news to us. Even if the second part hadn’t have followed, I remain sincerely impressed with the manner in which he delivered the news. Never would I wish for anyone to have to share or receive such news, but if it’s got to happen, the way he did it was just incredible. Even my parents were impressed. There’s so much more I want to say on that matter, but my tired mind is somewhat cloudy at the moment, so perhaps I’ll have to revisit this section later. For now though, I’ll just leave it at that he did a fucking amazing job telling me I was dying, even if it turned out to not be entirely true.

+++

What else what else?

Ah yes. I was discharged after 76 days in the hospital, my new record! Although I’m not sure if it really counts because I did get several LOP’s (leave of pass) which allowed for me to venture home for several hours on different occasions. But, as can be expected, it’s still so fucking nice to be home.

For now the plan is to keep with M/W/F labs and infusion, where I return to my home away from home and remain closely followed by my team. On these days I also receive my antifungal, which will continue happening for at least a few more weeks. These visits also sometimes involve transfusions, though I’m hoping they will get fewer and farther between as my immune system starts to reboot some more… so far, so good on that front.

The latest struggle has been with nausea. It’s a fucking bitch. I’ve eaten more the last two days than I have thursday-sunday combined, but I still can’t seem to shit which is driving me absolutely crazy! I just wanna not feel like I’m going to barf and also be able to poop!! But apparently at the moment that’s too much to ask… fuck.

Don’t worry though, even if it’s a month from now you’ll all be properly updated on how all of these situations play out (most importantly the pooping one, you know!). In the mean time I’ve got to call it quits, as I am exhausted!

Hanger & Love

It is now 9:41AM and I’m fucking HANGRY AS FUCK.

Today I was scheduled to get both an LP with chemo as well as a bone marrow biopsy, but GUESS FUCKNG WHAT?!

They changed the order late last night! FUCKING AWESOME.

So now I’ve been NPO since midnight and I JUST WANT TO FUCKING EAT AND I CAN’T! Because not only did they change the order, but they fucking split it up too! Which means that today I’ll get my biopsy done AT SOME POINT and then I’ll get my LP done SOME OTHER FUCKING DAY.

WHOOP DE FUCKING DO! 

So there’s that. And my belly is still bloated as FUCK. It’s like I swallowed a fuckinng watermelon. And no matter now much I poop IT WON’T FUCKING DEFLATE!

And also, I was woken up this morning by the nose doctor people who wanted to scope my fucking nose again at SIX FUCKING AM. Like, I need sleep, people! Not even beauty sleep at this point, just normal person sleep, and I can’t even get that apparently! And I have to pee, but I’m pretty comfy in bed and this is like the last good thing that I have going for me right now. Well, that and the fact that Tim is here 🙂 I guess that makes me pretty happy, too, now that I think about it. He’s all snuggled in the chair next to me and it makes me smile… okay, I guess I’m feeling better now!

He woke up when the nose people came in and we started watching a WWI documentary again (we were watching it last night and stopped because we were both really sleepy) and then we fell asleep again because, well, it was early as hell and sleep is a good thing.

Anyway, this was a healthy little rant that resulted in me realizing that although I’m still hungry as shit, life is still pretty good because Tim is here and he works wonders  on my heart and soul. So S/O to Tim for being some of the best medication I could have! (Suck it up and deal with my sappyness, people!)

Actually, since I’m on the subject of Tim, I think I’ll delve into the topic a bit more. So, as per usual, buckle up cause I’m not entirely sure where this ride will go!

So Tim is kind of the best. When this whole thing started back in September 2015 and my life was thrown into a massive tailspin I gave him an out. I felt like this was a huge bomb to have dropped on anyone, and although I was (and am) crazy about that kid I felt guilty dragging him along on the newly found shitshow that was my life. So I gave him an out. I told him straight up that if he wanted to leave he could, I just wanted him to be honest with me. I had zero expectations of him to willingly tag along in this new adventure, and I didn’t want to be an anchor that held him down or held him back from living his life or doing what he wanted to do. I mean, sure I hoped he would stick with me, but I totally understood if he wanted to leave, and if this whole cancer ordeal was too much. That’s the worst part about having cancer, really, is how it impacts the people around you.

But Tim stuck with me. There was never a moment that his loyalty wavered, never a moment that I felt him flinch about his choice to stick around and be with me through the awful days that would ensue. Of all the things that he’s done for me, staying with me through all of this has been the greatest gift of all.

When I relapsed, he was in Oklahoma for a six-month stint for work, and I was unable to talk to him face to face when I received the news. So I had to call him (I figured a text was not really appropriate for sharing the news) and tell him what had happened. I had toyed with the texting idea, but I couldnt’t get myself to type the worlds “I relapsed” because it made it seem to real, and I was definitely in denial for a good chunk of time. But saying it was even harder, and he was the first person I told about the relapse.

He managed to get out of work for a moment to call me, and I had to hike up my big girl panties and muster the strength to say “I relapsed”… which proved even harder than typing it. I had gotten myself under control (I thought), but when I told him, I broke down into sobs. It wasn’t so much the fact that I had relapsed, I realized, but the fact  that here was this great man who stuck with me through the first go-around of cancer and stuck with me through the thick and thin without a moment of hesitation, and now I was going to put him through it again.

And how lucky was I to have him stick with me through the first round?? Like never would I have excpected someone to stay with me through such an ordeal, and now, now I was asking him to go through all of it all over again. All the struggles and the uncertainty.

So again I offered him an out. Because no one should be expected to go through this shit once, let alone fucking twice. And I think it was more for my well being that I offered an out again. Because, really, cancer is such a shit show. It really is. And, like, fuck, no one should have to be roped into it; dragged along through the mud, through the unknowing. So again I told him that if he had to leave, he could. I just wanted him to know that again, it was ok if he had to leave. Because it can’t be easy being in the position that he was in.

It broke my heart just as much the second time as it did the first time. Here was this kid that I loved so much, and I was giving him permission to back out. Like how fucked up is that? That I would feel so guilty about being sick and having him along for the ride. Gah. It’s so shitty. I still feel guilty about it. Like I’m writing this through tears right now. Maybe it’s because I’m tired and still kind of hangry, but really it’s more than that, too.

I joke with Tim, saying that he’s the one who was supposed to make this relationship difficult, because I knew what I was getting into what with him being in the military and all, but now here I am… making things difficult in a different regard. And that’s part of why I feel so guilty, I think. Because I knew what I was getting into, but he didn’t. And now I’m all kinds of difficult and unpredictable that neither one of us could have ever really been prepared for.

But anyways, he’s still sticking with me. And that fills me with so much love and appreciation, even if there is still some guilt because how the hell can someone power through such shit with me?! Like how is the even possible for someone to be so unflinchingly faithful and supportive and amazing? It boggles my mind. It really does. And I love it, I love it so much– but I love him more.

Update: I’m sitting on the toilet pooping while I write this, just thought you all should know! And now I’m down in pre-op waiting to go back for a bone marrow biopsy– remember I mentioned that earlier? Well it’s still at 11:15 I guess, so now I’m down here! I think my plan will be to stop writing now and then see where things go when I wake up and am drugged up– yknow, just to see what else I happen to write about. Until then– I bid you adieu!

Well I’m back, and pretty drugged up. So basically I decided I’m going to shut up with this post and eat food because I’m STARVING.

So yeah, gonna eat up some food real good and then probably pass TF out. Also, my butt hurts. Well, my iliac crest, but basically my butt.

Cheers and happy Monday, y’all!

Scary Tweezers, Lesions & Oatmeal Poops

Oh my my oh hey hey.

So yeah, Thinga keep getting better and better!

(Sarcasm)

Fucking great.

So I guess this infection of mine is something gnarly.. Maybe I misunderstood the doctors, but from what i heard it sounds like they will have to do surgery. But not just like “oh let’s take out this shit” but like ‘”let’s take this shit OUT” meaning it will potentially leave me disfigured. Or, as my bothers would say, more disfigured.

They would have to take out all the infected skin, which as I understand is like the entirety of the inside of my snchnozz. I think minday they’ll come back and extract more of my nose. The other day they sprayed numbing shit up there and then stuck a light up there along with some tweezer-looking gadget and pulled a bunch of shit out. The light was like ten inches long and it was fucking terrifying! Like, lady, my most isn’t that big, trust me! I’ve gone digging for boogers before, and trust me, it’s not that deep! Fuckin’ hell! The tweezers were pretty aggressive, too. She shoved that shit up there unapologetically and started ripping at shit I’d say it was shit that didn’t need to be ripped at, but it actually did need to come out. It was like nasty infected booger shit. I tried to extract that nastiness myself but it was totally a job for scary tweezers. Blah. Fuck. Nasty shit, yo.

So maybe I’ll look like Voldemort. Or Michael Jackson.

The possibilities are seemingly endless.

But I like my nose!!! I don’t want to fucking lose it!! And I definitely don’t want to look like Voldey or MJ.

The clostest to MJ I wanna get is propofol. And not enough to kill me, that’s for sure!

Fuck, man.

FUCK!

What else is new?

The lesion behind my ear decided to shed today. So that was neat. My wonderful family had an impromptu Easter gathering at my house so that I could eat and see everyone which was the fucking BEST and it was so amazing to see everyone. My cousin even flew in from D.C.! I ate to the point of wanting to throw up which was amazing, and my other cousin even made me a personal cake for my belated bithday! My family is literally the best. Gah I can’t even express how amazing they all are. S/O to all of you for absolutely making my entire day!

Oh, yeah, anyway, back to the lesion! Cause I know you’re all chomping at the bit to find out more about it.

Tim stopped by for a quick visit which is always welcome, and while we were chatting it up I felt behind my ear simply to determine the progression of the sore, and a large chunk of skin fell off into my hand.

Ok, it wasn’t really that large. But it was like a pea size chunk of dark skin that just popped right off. So there’s that, which is pretty neat I suppose.

There’s got to be more that I can share!

I’ve basically been surviving off of oatmeal for the past week or so. I go through phases of cravings (Mexican food, pasta, potato potato soup…) and now it’s been oatmeal. It’s fucking awesome. I eat so much god damn oatmeal! It’s delicious. Most notably the fruit and cream kind. It makes me poop so normally! Like three poops a day, and I don’t even have to take laxatives for it! They just happen. It’s so great. It’s pretty annoying when I have to take stool softeners and all that, and it’s even worse when I poop like every other day. But with this whole oatmeal diet I have going on, I don’t have to worry about that at all! It’s so so great! My advice for today is to eat tons of oatmeal! Because it’s fucking delicious and it’ll make ya shit real good. Ugh! So great. Oatmeal poops, man. That’s where it’s at.

La la la so now it’s 3:47AM. Maybe it’s time to call it a night and write more later today. There’s got to be more for me to talk about! But I don’t want to have a have a half-assed post. Cause that would be the worst. Even worse than cancer! I couldn’t do that to you people!

Alas I think I will call it a night and think of what else I can write for later today. Happy Easter to all! And to all a good night! (Until I maybe post again later today!)

I choose…

Well, as it goes a lot has happen since I last posted.

Turns out that this last round of chemo didn’t do the trick and I still have blasts.

Fuck.  Fuckin’ FUCK! Fuck. FUCK! FUCK! 

So that’s pretty shitty. This was the hard-hitting chemo that was supposed to work. That was supposed to kick ass and get me back into remission and it didn’t FUCKING WORK. So yeah, that’s pretty damn fucked up. Fucking hell.

So yeah. I guess we’re working on the next plan of action, then. Which seems to be the alternate option I was initially given– the outpatient oral chemo that will happen over a couple of months.

But it’s okay. It really is.

I was pissed off and angry initially– and definitely devastated– but it’s okay now. I’m at peace with the idea. I trust my gut and my gut says that everything is going to be okay and that everything is going to work out.

It’s a relief, really. I decided that instead of dreading all of this, and being afraid of what’s to come, I’ll take it all in stride.

I choose to be okay with this. I choose to accept what’s going on. And holy shit let me tell you it makes such a god damn difference to just take a deep breath and decide that, yknow what? It’s all good. It is. It’s okay. That’s not to say that there won’t still be tears of frustration, anger, or sadnesss, but I’m so much more at peace with everything that’s going on.

It will all be okay. Because I believe that. I choose to believe it, and so it will be. I just gave to be patient and let everything work itself out.

So anyway, that’s kind of what’s going on. I’m not in remission. The two rounds of chemo didn’t work like they were supposed to. So now we will be trying the oral stuff , I guess. Which, as I understand, will be partially outpatient which is nice. I also think that it will be “easier” in a couple senses that maybe my hair won’t fall out, and that I can be at home and have a little more freedom which would be nice. As for CHOP and transplant, I’m not sure where I’m at with that. But again, I’m okay with that. I’ll figure it out as I go and everything will be okay. Just have to take a deep breath and let everything fall into place, which I’m sure that it will.

Life’s good. Everything is good. Just have to give it some time.

Also, it’s like 3AM so if there are more typos than usual that’s probably why.

I do feel okay with all of this. I really do. My gut tells me that everything is going to work out how it’s supposed to, and I trust that. Deciding not to be scared is a big decision, and I’m so much happier having decided to take it all in stride and not be fearful if what is to come. Life is too short for that shit!

In other news, I’ve been started on insulin and have been having my blood sugar checked like five times a day. That’s whatever, too. I guess the steroids that I’m on fuck with my sugar levels and so they have to monitor them and all that. They don’t think that I’m diabetic (yet?) but they need to keep an eye on it regardless. It’s a bit annoying, but hell it’s really not that big of a deal.

See? I choose to not be overly worried.

God damn it’s so nice just being at peace with all of this shit. It makes life so much easier. I wish I had chosen to do this sooner.

Fuckin’ hell, though. As OK as I am with all of this, I’d sure as hell be ok being done with it all, yknow? Like, shit, man. Lemme be normal!

And that’s that for now, I’ve been pretty swept up with things. Oh! Also I have a nasty fungal infection that has presented itself as these grody lesions on my skin. The dermatologist man took a biopsy of one on my leg and determined it was Fusarium(?) so now I have three cute stitches in my thigh. ID (infectious disease) stopped by to check it out and I had like six people poke and prod at it so they could learn about it (being a guinea pig is just the the best) especially when they’re like “does it hurt??” And I reply “only if you really poke at it” and then they proceed to poke it a fuckton. Like wtf?? I am not going to be working in the medical field, if you didn’t already pick up on that. I’ve done my time with medical shit, I ain’t gonna be having anything to do with it when this is all over. Fuck that.

What else? I know I said that was about it, but let’s be real there’s probably totally more.

Oh! I think I mentioned the pooling of blood/spinal fluid in my upper back? Maybe? I could check but hell where’s the fun in that when I can just relive it and tell it again.

As as result of the LP’s (lumbar punctures) and intrathecal chemo there was pooling of blood/spinal fluid between my shoulder blades. As a result, my back spasmed a lot and it was pretty much one of the worst pains I have ever felt. When it flaired up all I could do was just writhe in pain. It shot down my arms and into the palms of my hands, and there was nothing that could really be done about it.

It fucking sucked ass. But the good news is that I got morphine which worked fucking WONDERS and it was only maybe a week that I had to deal with the discomfort which was nice, and the pain has since gone away.

I did have to sit through a 2 hour MRI though, and that was pretty exciting. Thank god for Benadryl, morphine and Ativan! That lovely little concoction made the time pass more easily than it would have otherwise.

And yeah! That’s kind of where I’m at with things. This was a sort of sleepy-half-assed post but I figured it was about time for an update on things. Stay tuned for more updates, they’ll hopefully be more frequent since I have already started a couple. Also, I’m open for suggestions and question! So if there is anything you want me to address or are curious about just let me know and I’ll be happy to talk about anything!

Love to all of you!

Slacker’s Update

So the past couple of days have been pretty shitty to be completely honest.

The lumbar punctures pack a punch, When they take out the fluid and inset the chemo there’s often a period of time where your spinal cord/fluid is all wacky and they’re like “what the fuck? We lost our mojo.” And then it’s a whole lovely process of having shit figure out how to return to equilibrium.

In the past it hasn’t been too terrible; usually just a throbbing headache that goes away with the help of the Almighty Tylenol. But the past few– fuck– they were real sons of bitches lemme tell you.

So the worst of it started like four days ago, and my neck and shoulders were fucking killing me. It was so bad that I was literally on the floor sobbing, writhing in pain. There was no position I could find that could alleviate the excruciating pain that was spasming in electric pulses along my upper spine. The pain shot down through my arms, and right to the center of my palms.

At some point around this particular incident, I had a float nurse come to take care of me. Since I’m not getting any chemo, really, my primary nurses are tending to the kids needing chemo, so I get these float nurses. Which is all fine and dandy. Until I have to do their fucking job for them! Like what the actual hell??

This one night, my back flaired up and I was again writhing in pain, trying desperately to find any source of relief, and this nurse comes in and just fucking STANDS there and watches as I shrivel into a ball of agony and tears. Like… who the fuck does that?? I get feeling helpless, but do a bitch a favor and offer at least some pain meds or get the fuck out because pitiful eyes and awkward glances sure as hell aren’t doing me any good! FUCK!

Oh, on another note, the same lady didn’t know how to give platelets.

Let me repeat that for you: SHE DID NOT KNOW HOW TO GIVE PLATELETS.

I’m trusting this lady with my fucking life and it’s fucking THREE IN THE GOD DAMN MORNING and there are THREE– THREE — nurses in my fucking room trying to teach her how to give me platelets. Good news: I’m still alive. Bad News: I’m still a bit bitter.

Annnnnyway, where were we? Ah yes the back spasms and the pain of a billion suns.

I ended up getting an MRI of my spine to see if they could locate the source of the pain, and it was found that I had some hematoma-y pockets of fluid around the top of my spine that was potentially causing the nerve endings to be stretched in uncomfortable ways. As a result, they decided to hold off on any more LP’s until the issue is resolved (thank God!).

So in the mean time, I have this lovely cocktail of meds on top of what I already get that seems to be working well. The only down side is that I’m usually coming off one type of pain killer/muscle relaxer before the next bout kicks in.

Anyway. Yeah. So that’s pretty much where we’re at currently, day 51 or 52 maybe? Time flies when you’re having fun I suppose.

Also, celebrated my 23rd birthday in the hospital– the first one since I was born! I’m looking forward to the years to come, though, when I can look back at all this shit and laugh, knowing that I finally beat this mother fucker once and for all.

There are still those down days where I’m sad, but in general, I think I’m even more of a bad ass bitch warrior this time around. I’m not taking any shit. And honestly, compared to all my other times of having been in the hospital, this time it quite a bit of fun (well, in general). I’m pals with the nurses and docs, I look forward to rounds in the morning because we exchange fun facts for the day, the people who clean the room are absolute delights… everyone is so wonderful. And as much as I dislike being in the hospital, and as much as I feel like a crabby bitch some days, these people are my people and I love them. They look out for me and that’s a feeling that, even when I’m feeling like my spine is being ripped from my body by the razored talons of some hell-beast, gives me an extra push to man up and face this wild ride.

I mean, shit. I’ve kind of been dealt a shitty hand (if you couldn’t already tell), but it is what it is and I’m so fortunate to have some many people behind me. Not a single day goes by where I am not thankful and deeply humbled. Now I really have to beat this whole cancer thing or else I’ll feel like a total asshole! Hahaha, but really though. You all are the best. I don’t know where I’d be without a single one of you!

Wait, okay, so yeah I guess the update was that we’re waiting for my shit to figure its shit out so that we can proceed with another MRI and LPs. Not out of the woods quite yet, my dear readers! But ya gotta take it one day at a time, or even one step at a time as the case may be.

But there will be an end in sight. And I’ll be victorious!