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!

The Power of Positivity And Prayer

I’ve though about writing this post many times now, but it never really felt like the right time, or I was too angry/sad/whatever to really not sound like a total asshole. So I decided that today I will try and get at least some of these thoughts out, hopefully in the most respectful way possible. As always, there’s no offense intended, just the honest and undeniably raw emotions of a girl again fighting for her life.

Growing up, my house was never particularly religious. We didn’t really go to church unless it was maybe for a funeral or a Christmas gathering with family. We didn’t say Grace before meals, or do anything like that. My parents were (and are) incredibly accepting of whatever we wish to believe in, and just because we didn’t practice a relgion as a family didn’t mean that we ourselves couldn’t pursue what felt right to us, or at least explore the world of religion around us.

Like many, we, or at least I, was aware of the concept of God and Jesus and all that. But it seemed to strange to me to have so much faith and belief in people/powers like that. Honestly, I’m still incredibly ignorant to a lot of this stuff, which is pretty embarassing especially because so many of you, my supporters, send up countless prayers for me on a daily basis.

I don’t really even know where to go from here– there’s so much I want to say but don’t know how or in what order. So be prepared for a potentially even more scatter-brained post than usual!

Just because I’ve never directly believed in the common belief of God, doesn’t mean that I haven’t believed in something. Sometimes my beliefs fluctuate… I think there very well could be a “higher power” if you will, I think that maybe it’s not a person, but an energy or a… life force, maybe? I’m not entirely sure. But I don’t think it’s crazy to think that there’s something bigger than us out there. When things are going well for me, I think that’s usually how I choose to see things. Either that, or maybe I just roll along through life not really putting much thought into the matter. But when things really get shitty, that’s when I really start delving into the possibilities of who or what could be “behind” the situations I’m going through. It’s almost like I go from not really believing in anything to believing in everything– every religious figure from every religion, every higher power that might influence what situation I’m in. I go from not praying at all to catching myself sending up prayers to Gods that I don’t usually believe in, in the hopes that they’ll hear my pleas and find it within themselves to answer my prayers even though I only send them my prayers when I’m in need. Does that make me a selfish douche? So be it. But the way I see it is that these figures, or powers, are there to help us. To give us something to believe in, and they will help us when we’re in need… even if that’s the only real time we turn to them.

When I think of religion, I usually associate it with God and Jesus and, forgive my ignorance, but all those sorts of figures, but mostly those two. When I found out I relapsed back in February, I was pretty pissed. I was pissed, I was terrified, I was confused. Instead of asking “why? Why me? Why again?” I was more angry. Furious, really. Furious at these figures that I never really believed in until shit went south of me. I had a bone to pick with this God, with this Jesus. What kind of fucked up game were they playing with my life? Lulling me into a false sense of security for 10 months only to surprise me with a relapse after I’d fought so hard and gone through so much.

They were the first ones I turned to. Like, what the fuck?! Who does that to a person?! I knew I wasn’t the only one going through hardships, but for me, this was my life that “they” were fucking around with. This was my family “they” were impacting. How dare they?? 

That was a weird place for me to be. Stuck wrestling with how and why this shitty event could have happened. I’d already been calling myself a survivor, planning for my one year re-birthday. Planning trips and gatherings, applying to schools again. Returning to normal. And then WHAM! (little Deadpool reference there 😉 ) the air was taken right out of my sails again, throwing my life into a spiral of what ifs and what to dos all over again. But after the initial shock and fear wore off, I went from being resentful of whatever had “caused” this shittastic event to asking for help from the powers I had been so quick to despise. Maybe that’s human nature, but I’d be lying if I didn’t feel sort of shitty about that. Like, “fuck you! … oh, but also please help me?”

I guess the point of this post is that, although I’m not sure what I believe in, I’ve started believing in just about everything that can potentially help me. Sending up thoughts to powers beyond my fathoming. And along with that, I wanted to say another thank you to absolutely everyone who is praying for me, sending me positive thoughts and altogether keeping me and my family in mind. The culmination of well wishes works wonders, and I’m not kidding when I say that I can feel the goodness radiating my and my family’s direction. I’ve come to realize, maybe even more so just while writing this post, that above everything, I believe 150% in the power of positivity. Whether that be in the form of prayer, good thoughts, good energy, good company, what ever it is, I can feel it. I can feel it in my heart, I can feel it in my soul. I feel it all around me. It’s a power beyond anything I can describe, and I’m again at a loss for words for how much all these thoughts together are impacting me, and how much I deeply appreciate them. It’s miraculous. The world works in mysterious ways.

I decided to write this post for a couple of reasons. I’m feeling like I’m a little scatterbrained at the moment, but I’ll continue regardless of potential repetition. When I settle down from being angry at the powers that may be about my situation, I become even more open minded to the idea of religion. I have a Rosary that was blessed by the Pope, I have Holy Oil that is supposed to work wonders. I have other trinkets from other religions that I hold onto and try to pull goodness and strength from. I have stones and essential oils that I believe can help me. I have books I read to give me strength and encouragement when I feel I have none. But more than all of that, I have people– and entire army, really– behind me pushing me on and encouraging me. Supporting me. Loving me. Praying for me. Giving, giving giving time from their busy lives to keep me in mind, to come hang out with me.

I also decided to address this topic today because, although I still have a long road ahead of me (that’s a line I’ve used several times before in earlier posts), this morning was a great one. The CBC they drew this morning came back, and the peripheral draw showed that there were NO LEUKEMIC BLASTS! I’m only on day 5 of treatment, but hell fuckin’ yeah! Treatment, I’m sure, played a role, but I think that the continued outpouring of love and positivity worked perhaps even harder. I was told going into this, this “high intensity” chemo that things wouldn’t be easy, and who knows, maybe the hardships are still down the line a ways, but for now, I’ve been doing remarkably well. And that, I entirely attribute to all of you. All the countless people sending their thoughts my way.

I’ve said it once, I’ll say it a million times– thank you all, from the absolute bottom of my heart. I wouldn’t be where I am today without all of you behind me. I am beyond humbled, and I have so much love, gratitude and appreciation for every single one of you.

Thank you!!! And here’s to the next leg of this wild ride 🙂