leukemiagnome

[leukemiagnome]

i'm so bad at keeping up with this...

Posted to Facebook on September 6, 2019

I honestly don’t know how long it’s been since I’ve interacted on Facebook. I think I started staying away after our climate took a left turn and everything became so saturated in sadness and negativity.

But, the desire to write about my experiences with leukemia and recovery has been something that’s weighed heavily on my heart for some time. It just took a lot for me to muster up the courage and energy to divulge my thoughts and emotions surrounding my experience with getting sick, relapsing, recovering and everything associated in between. First of all, I want to say that a big part of why I was hesitant to write a piece like this was the fear of coming off as fishing for sympathy. When you’ve never experienced something as life-changing as being diagnosed with cancer, it’s hard to fully comprehend just how severely such an affliction can affect a person’s life. I get it. And there is a part of me that wants to simply leave it at that. However, sometimes I feel so misunderstood. Oftentimes, I imagine myself just shaking certain people while screaming, “You just don’t understand!” I know that’s not a realistic thing to do, so instead, I’m left stewing with my own thoughts (more than I’d like to). So, I thought it was time to get some things off my chest. I know there will be different reactions to what I’m about to say; some will still take this post as me fishing for sympathy, others won’t relate because maybe they’ve had a different experience with cancer, and maybe (hopefully) there will be a few who may actually change their outlook on people who have been touched by this disease or something similar. Whatever each person’s reaction may be, I’m hoping that writing this may give me some solace knowing that I simply, “Said what I had to say.”

Mostly everyone knows by now how I was diagnosed with acute myeloid leukemia as summer wrapped up in 2017. Since then, a lot has been a blur as you really don’t get much time to simply breathe. You’re very quickly whisked off to bone marrow biopsies and immediately pumped with various forms of sickening chemotherapy. Many know that chemotherapy is a terrible treatment; the way it eats away at your insides, deteriorating your body to an almost unrecognizable state. A lot of people don’t know the gory details or how it actually affects your ability to retain new memories, think rationally and clearly, or even remember past beautiful memories that you made prior to being diagnosed. Chemotherapy is essentially a thief, taking away so much of what you once loved and what made you — YOU. It tore away at me from the inside out, causing me to become delusional, turning me into another person, and ultimately making me into a completely different person than the person my (now) husband had proposed to. Chemotherapy made my stomach raw to the point I could only ingest liquids and made me throw up blood even if I didn’t know I was actually throwing up blood. Sadly, the effects of chemotherapy (and radiation) last beyond your treatment period and you’re left with a version of yourself that you don’t recognize in addition to being left to pick up the pieces and the task of “rebuilding” yourself. Over a year after having my bone marrow transplant, and experiencing a relapse, I find myself still struggling to repair the damages. Though many of you see me happy, smiling, and optimistic, know that I choose to show you only the best parts of me because the other parts are too hard to come to terms with, much less share with the world. Haven’t you noticed that I rarely post anything on social media? Yet, when I do, I appear to be just fine. What I’m not telling you is how I often think about just getting a physical therapist because, even though I’m a young woman in my twenties, my body moves and works like I’m in my seventies. If I drop something on the floor and I’m home alone, oftentimes I can’t even think about picking it up because I might not be able to get off the floor on my own. I don’t mention how I feel like a huge burden to my healthy, loving husband and how it breaks my heart that I cannot do things with my husband that I should be able to at my age. I can’t talk about how I hate my body and everyday I struggle to look confident, when actually, deep inside I really hate the person I’ve become. I don’t tell you that a lot of the time I have no appetite and I drink Ensure just to get my base nutrients so I don’t fall ill. I don’t talk about how getting sick has put myself and my husband in debt because when you can’t work, you only get paid a fraction of what you made when you were able-bodied (even though now you have doctors bills and medication to pay for) I definitely don’t mention how this disease has caused me to lose family and friends, ultimately putting me into a depressed state that sometimes causes me to stay in bed for days at a time. I don’t like to talk about the fact it truly breaks my heart to constantly watch people and life move on without me without even blinking in my direction. I don’t tell you how I feel lonely now that many people have dissipated from my life and I most likely won’t mention how often I cry about that fact that I’m going to be a bride in December with most likely no bridesmaids or Maid Of Honor. I wish so badly I had friends to help plan my wedding, to watch me try on my wedding gown and to plan bachelorette parties and bridal showers, just like any other bride. Missing out on monumental parts of my twenties, knowing realistically I won’t get these moments back, is so hurtful.

Like I said before, to some people, these things may all seem entirely trivial. But, that’s because so many take these things for granted. Many view these moments in life as “typical,” and so many could not even imagine actually not being able to do or experience these things. I was the exact same way. I went to bed each night “knowing” I was going to wake up healthy the next morning. I said hurtful things to people because I “knew” I would see them again and eventually have the chance to make-up in time. I procrastinated and put things off because I “knew” I had plenty of time to do whatever it is I wanted. But that’s exactly the thing; time is no one’s friend. It’ll go on with or without you. Time doesn’t discriminate and it never stops. I wish I was wise enough to learn that lesson a long time ago. I wish it didn’t take me nearly losing my life to realize all of this. I know now though, which is probably a big reason why I feel like I need to just go ahead and divulge my heart’s aches and just say what I’m feeling. I truly hope no one takes this as an attempt to achieve some quick sympathy. I just really wanted people to know that once the battle is over, doesn’t mean the war is over. Cancer patients go through so much to rebuild their lives. It’s slow, sad, and painful. Like I said before, cancer (and the treatments) rob people of so much, and the journey to attempt to get the normalcy back isn’t an easy one, nor does it always end in triumph. This note isn’t just to help you see things from the perspective of a cancer patient, but just other people in general. I feel like many people today are so wrapped up in themselves and the concept of “one-upping” the next person that they forget to slow down and simply ask the person next to them, “How are you doing?” Sometimes, that little invitation to open up is all people need to keep them from feeling alone and hopeless. I know I am far from perfect, and I have made more than my fair share of mistakes. I’ve probably made enough mistakes for this lifetime and the next. But, I know that I am trying my best to move slower, do things with more intention and compassion, and simply be a better me. I don’t know if I’ll live to see ten years from now or even next week, but I know I am going to try my best to make each day count and try to remind people around me that they’re loved, cared for, and thought about.

That’s all.

[leukemiagnome]

It’s been almost a year?!

I think I probably just got really overwhelmed with being sick, getting treatments, being so unwell I could barely think for myself, among a plethora of other mishaps and obstacles. I was happy to finally have an outlet where I could regularly document what was currently going on in my life / treatment process. But, I just got to a point where I seriously didn’t even have the energy to keep up with it all.

Anyway, I’m back. Almost a year later, but I’m back. The biggest news is that I’M IN REMISSION! The doctor officially deemed me in remission back in October ‘18. That was the most emotional day ever. I couldn't believe after all that shit, I was finally in remission. After sleepless nights, nights of throwing up blood, a ton of bone marrow biopsies, countless days / nights crying or being confused, among other things, I was finally in remission. I spent the first few weeks on a high, constantly celebrating the good news and eager telling anyone who was within listening distance or would listen. Then something weird happened; I had this weird shift in my paradigm where I was no longer as happy and I was struggling to find reason to celebrate. I started getting really depressed and I didn’t even want to leave the house (much less my room). I’m still slightly in the midst of that mindset, but I think I am slowly coming out of it. I’m sure that making small changes in my diet as well as incorporating some almost regular physical activity has helped alleviate these feelings, but I know I still have some work to do. In addition to having difficulty getting back into the “normal” swing of things, I’ve also dealt with bouts of low self-esteem and self-consciousness. I can’t believe I used to criticize my otherwise “healthy” body back before I was diagnosed with leukemia. I thought I was fat, unattractive, or that my body just could be better in general. I was way too hard on myself when really, I should’ve been honoring my healthy body. Now, I wish I had that “old” body back. I’m struggling to barely stay above 105 lbs, my hair is growing-in at a turtle’s pace (and it seems thinner), and my skin is so dull and dry. These are things I try so desperately to remedy, but it’s so hard to reverse these effects to my body post-treatment. This all just causes me more stress that I have to learn to manage. The stress (in turn), I have noticed, causes me to snap or react in a short-fused manner when I normally wouldn’t. I’m even more sensitive (I had no idea that was even possible, ha ha) in situations. 

In addition to all that crap, I've also had the pleasure of dealing with some losses... people that is. There are people who I thought were genuine in my life, who I thought more highly about than they thought of me, and I had to figure it all out the hard way. I learned that you can’t even trust family as much as you may want to (because, duh, family is supposed to love you and be there for you by default, right?? :/ ) and you really have to have your guard up at all times and people need to work really fucking hard to gain your trust. I never wanted to be someone who lived her life that way, but I learned the hard way that sometimes, it just has to work that way. And it’s a bummer. It’s made thinking about my future wedding (the big one with friends and family) difficult and stressful. It’s already February and I had planned on a wedding by the end of the year and I have yet to even set the venue. Merp.

Welps, who knows when I'll be back to vent my soul (to most likely no one). I’ll try to be more consistent. I did tell myself that this year I would take writing more seriously and try to nurture it more regularly. It’s something that I think is important - hopefully, I can treat my mind as importantly as I treat my body. 

Christine 

[leukemiagnome]

This has pretty much been on repeat.

[leukemiagnome]

It’s Been A While

I haven’t written since New Years Eve...

A lot has gone on since then, which is probably why I have neglected to write. I vowed I was going to keep up with my writing and documenting, but sometimes, I just don't have it in me. Between blood transfusions, chemo treatments, and simply giving my body time to rest, I don’t always have the energy or motivation to sit and write. I think another factor is just not wanting to rehash any less than ideal experiences that I have had. I think the latter has been the main reason for my absence, though.

Since NYE, I’ve had an engagement / birthday party combination, some not-so-good news from a bone marrow biopsy, and a few changes in chemotherapy treatments. That’s just to name a few. In between all that, I’ve had a couple bouts of illness due to my treatment which really depleted my energy and left me feeling discouraged. I’ve noticed that recently, it’s a real struggle to keep myself optimistic and positive. I feel like lately, I’m taking each setback to heart and I’m needing to actually WORK to pull myself out of these “funks.” Seems as though whenever I have a bad (health) day, my mind starts creeping into these dark places and I start thinking about the worst possible outcomes for my journey, then it takes me a while to pull myself out. To be honest, it’s a blessing I have the support system I do, because I can’t imagine being able to pull myself up and out of these sad moments on my own.

At this very moment, I feel a level of optimism, which is awesome. Some days, I feel the most hopeless I could possibly feel. I mean, I’ve got a good reason to feel the way I do; we’ve been playing with treatments (both trial and FDA approved) since August, and just this next week we’ll be going to City of Hope to speak to specialists about possible bone marrow radiation. It’s a lot. I’m not gonna lie... so it all gets very overwhelming.

Just this week, I’ve made the decision to begin shifting to a vegan diet as well as implementing meditation into my life as another form of “treatment.” A complimentary treatment, if you will. Almost everything I’ve read about treating cancer touches on the importance of being stress-free and how being in a peaceful state really assists in the treatment process. So, I figured - why not? I am so up for anything at this point if it means achieving remission in the end. Consistency has always been a challenge for me, but, when your life is on the line, I’d say that’s a pretty good reason to have motivation and to practice persistence. 

That’s all for now... I’ll try to make a point of writing again soon to report about my treatment outcomes and decision on bone marrow radiation.

Christine

P.S. I found a couple of movies that really fucked me up, but they were actually pretty good. I didn’t know they were about cancer *EYE ROLL* so I ended up watching them on accident, but Miss You Already was my favorite. Followed by, Irreplaceable You.

[leukemiagnome]

happy new year

The following is a post from Facebook on January 1, 2017.

Being my emotional, sentimental self, I had to come straight to Facebook Tumblr to say a little something and wish you all well into the new year...

2017 was definitely a hell of a year for me. I experienced my highest of highs and lowest of lows. Yes, I may have been diagnosed with my illness this year, but I was also blessed enough to become engaged to the love of my life who has been my steadfast rock throughout this entire process. Though this has no doubt been a terribly scary year for me, full of uncertainty and sadness, I have so much to be thankful for in the midst of it all. I have been given an opportunity to view life with such deeper appreciation and been given the opportunity to learn to love harder and deeper than I ever have before. This year and situation has also highlighted the people in my life who I am so thankful to have met over the years. Some of you have just shown how much love you have for me and it's been such a treat to experience all of your love and kindness.

As I turn away from 2017, and look forward into 2018 and all it holds for me, I am filled with all sorts of emotion. Relief and appreciation more than anything. I feel like this year has definitely strengthened my soul and taught me so many valuable lessons, it would be wrong not to be appreciative of what it's given me. Nonetheless, I am still so very ready to step into 2018, a year I am certain will be filled with so much love, renewal and opportunity for myself and my loved ones. I am excited to bring with me my newfound appreciation for life and heightened love for my family, friends, and wonderful fiancé.

I wish I could give each of you a huge, tight hug. But, for now, a virtual one will have to do. I wish you all good health, lots of happiness, and love in the new year.

[leukemiagnome]

a breath of fresh air

The following is a repost from my Facebook on December 21, 2017:

Today I received some of the best news I have received from my oncologists in a while. My oncologist called me today and said she wanted to share the news with me before Christmas: the preliminary results of my most recent bone marrow biopsy showed that the amount of leukemia cells in my bone marrow have reduced to somewhere between 5-10%.

Just a month ago I was devastated when my doctor had called and given me the results of my previous biopsy. She had told me I still had 40% in my marrow and it was a lot higher than she had anticipated. We didn't even know if I would be able to continue on the chemotherapy because of the damage it was causing to my muscle proteins. I felt defeated and scared that this therapy just wasn't going to work for me.

Fast forward to today, and the results have not only shown a drastic decrease in leukemia cells, but also that the therapy is not causing as much damage to my muscle proteins, allowing us some more "breathing room" to continue the therapy.

Now, I just need to push a bit further and fight a bit longer to get my body down to less than 4%, and I may begin prepping for my bone marrow transplant!

Prior to this last bone marrow biopsy, I had decided to only think positively and allow myself proper grieving time when necessary, but also to actively think only good thoughts and speak good results into existence... and this was my gift today. I truly believe that the shift in my paradigm along with all of your well wishes and prayers allowed me to receive the beautiful news I did today. I've never felt more thankful or grateful for life - for THIS life I have.

Thank you ALL for all of your prayers and good intentions. You all had a part in me receiving this news today.

My fight is still nowhere close to done, and I don't want to get lackadaisical now. I still need to push through and see this to the finish line, but I wanted to pause and take a moment to share my gratitude and happiness with you all!

Sending SO MUCH love, happiness, light, and HUGE hugs to you all.

[leukemiagnome]

bone marrow biopsy #7

Today I had my seventh bone marrow biopsy. My uncle stayed in the room with me while they did the procedure, and held my hand just as he had done before. Just as they began to prep me, I randomly decided to start recording, as a way to document the biopsy. I don’t know what my reasoning was; maybe after this is all over I will compile it all into some really indie vibey short film about how I overcame adversity. Maybe it’ll just be fun to look back on for my own viewing pleasure. 

I ended up taking three videos with my camera during prep time, then said fuck it and just decided to stream the whole biopsy on IG live. For some reason it gave me a sense of calm to show other’s what I was going through and what these appointments were like for me. I spared everyone the gory details and kept the camera only on my face, but the drilling noises into my back left a little something for the imagination. 

I’ve decided to document as much of this as possible and treat it all as a journey. Instead of always being down about being a cancer patient, I thought, I might as well have some fun with it and turn it into something I can eventually share with the world. A look into the life of a young cancer patient... If I write a book, I might title it, Another Biopsy? Haha, I thought that was super clever. Maybe my videos from various appointments and daily life antics will be featured in an award winning indie film? Shit, who knows.

On another note, today the doctor told me she has SOME concerns about my current chemotherapy, but luckily enough, my body still proved “healthy” enough to continue with this study drug I’ve been taking. It did give me solace to know that we aren’t even near exhausting our options for treatment with me. It’s just a matter of finding the one that will do the trick and kick this leukemia’s ass. I told my doctor my concern straight up: I just don't want to die...

Christine

[leukemiagnome]

I was a ghost ~

[leukemiagnome]

Currently in mah speakers.

[leukemiagnome]

these high school shows...

Sometimes I feel like such a child for indulging in such shows as Riverdale and 13 Reasons Why. But, like, I get what the allure is - to me, anyway.

I can’t believe I’m even going to admit this, but whatever. It’s not like anyone is going to read this anyway... or is someone? 

ANYWAY... 

I mean, I missed out on my entire “high school experience.” Which is a bunch of shit. But, whatever. It is what it is. Doesn’t mean it still doesn't piss me off sometimes. I missed out on a lot more prior to the high school experience, but that’s a whole other can of worms to open up. I dunno, just the fact that I didn’t get to have all the shitty, generic, high school experiences does get to me. I wasn’t in school enough, because I was busy running from my demons. I mean, so I guess it was my fault, in a sense, but then again it wasn’t. I had a reason to act out all crazy the way I did. I did, though, get to be the emo, scene, brooding, misunderstood teenager. Probs just a bit more than the next teenager and probs with better reasons for the whole facade. Maybe they’re all trivial things, but I wish I had properly been a part of the “freshman lock-in,” I wish I had participated in some sort of activity whether it be cheerleading for playing the fucking violin... I just wish I had allowed myself to be a part something bigger than myself. Too bad I had someone in my ear constantly tearing me down and discouraging me from doing anything remotely social or developmental for a teenage girl. I’m getting off topic, on to something I don’t even want to get into right this instant, sooo let’s reel it in.

My whole point in bringing up these overly dramatic high school shows is the fact that I watch them in such awe. I wish I could have one shot to go back in time and remake my high school experience. I wish I was crushing on someone for the first time all over again. I wish I was learning about puppy love heartbreak for the first time. I wish I could go back to a time where the biggest issue I had to overcome was my mom finding out I had ditched again or studying for a fucking math test. I remember when I was that age, everything seemed like the end of the world and I had no clue how anything would ever get better. Little did I know, life had a whole other plethora of shit show fun to shove down my throat once I got older. 

As if I didn’t have enough to overcome when I was a child. Hah. Life sure does have a weird sense of humor with me.

[leukemiagnome]

live or die?

I wish I could just be consistent with how I feel. Literally, one second, I could feel uber optimistic about my situation; feeling like I’m coming at this piece of shit disease with guns blazing and a vengeance. The next second, I could feel my weakest and most scared; tears quietly welling up in my eyes as I stare off at nothingness thinking, “what if the treatments just don’t work?”

Of course, it’s ideal to remain optimistic and wish for the best. It’s what I’m expected to do, anyway. No one expects the patient to curl up into a defeated ball and accept death without even fighting. But, I’ve got to tell you, some days are just not as easy to put on a strong face and brave the day ahead. I have all the [what I assume would be] normal fears. I worry about dying young, I’m scared of potentially not walking down the aisle with my uncle to marry the love of my life, I’m scared of how my absence would affect the people I love the most, I fear never knowing what it would be like to grow into a slower, more wrinkled version of myself alongside the love of my life...

In all honesty, sometimes I just really wish people wouldn’t offer such sentiments like, “You’re going to beat this,” “One day you’re going to look back on this and [fill in the blank],” etc. I’m don’t mean to sound like an asshole, but sometimes I wish people just wouldn’t say things they don’t mean. I mean, they can’t possibly believe these things they’re saying right? Unless they’re clairvoyants of some sort, how can they tell me with certainty that I am “going to beat this?” How do they know that “I’ll look back on this and think [xyz]?” Part of me feels pissed when I hear these comments and I almost think they’re rude to say. It’s like, you’re giving false hope about life to a person who medically and rationally DOES NOT KNOW what her future holds and has no way of knowing...

Well, this turned into a vent sesh quick. Tune in next time for more of my unpredictable and justifiably unstable moods. I’m getting yelled at from the kitchen so now I’m off to eat my stir fry.

Christine

[leukemiagnome]

No one warns you about sleepless nights, about unproductivity and the mundane, no one tells you growing up that one day you’ll find yourself bleeding your wounds out on the bedroom floor, or how bathrooms are sanctuaries; no one tells you about the fatal attraction towards the unhealthy that you adopt time and time again; no one warns you about the real dangers of the world- loneliness and pain, and all the ways you deal with them. They tell you not to smoke or drink or have sex, but they forget to teach you kindness to yourself, they forget to teach you self-love; they forget to teach you how to cope with rejection and pain, they tell you to forgive but never teach you how, they tell you to love but never the consequences of failed loves, they warn you about heartbreaks from lovers but never those from family and friends, they tell you to dream but kill it before you can climb its ladder, they read you fairy tales but lack imagination, they tell you life is hard, that the world is ugly, but you never see them making it less of all that, then you grow up not knowing what to believe or who to be, with your heart still young but wounded, and your spirit yearning but reluctant. You have a body with too many marks, eyes with too many scars, you carry hope like a sacred flower- all its petals fall each time the world disappoints you, and instead of abandoning it, you go tape it back together; and here you are, all patched up- old cotton cloth and rusty car parts; you’re barely alive, and in love with the idea of what life could live up to be, and though it never does, you never give up, and I would say that’s what makes you strong, that that’s what makes you beautiful, but all it makes you, is a dreamer. People never teach us these things growing up because they too carry flowers of their own, and they don’t want you to grow up without hope, because if you knew all this when you were too young, then you would not make it this far, and it would be a shame, because there is so much more to life than all this, and the only way to have it all, is to carry the flower of hope in your heart.

Eliot Knight (via eli0tknight)

[leukemiagnome]

while I’m at it, here’s a super depressing song I’ve been listening to that just hits home way too much. meh.

[leukemiagnome]

welps, here i am.

Since being diagnosed with acute myeloid leukemia, I’ve noticed I’ve actually had a real desire to write more. This probs stems from my overly battered brain from all things cancer related. It would make sense; for the past few months, my mind has pretty much been full of anything and everything cancer related. Between discussions of what chemotherapy routes to take, planning my next bone marrow biopsies, driving to and from UCSF, being hospitalized off and on, staying on schedule with a shit ton of meds, and whatever else, I just don’t have time to contemplate much else. 

But, the one beautiful thing I can take from this all is that it’s reignited my zest for writing. I mean, I used to absolutely love writing before. That was before some monster in my past stole that passion from me. But, that's a story for another time. Anyway, here I am. Back on Tumblr - and I truly hope I stick around this time. I anticipate I will just because of everything that’s been going on. I seem to have a lot of shit on my mind these days, but then again, who wouldn’t after being diagnosed with AML at age 27, just two days before being due to start the fall semester. I digress.

I’ve probs started and deleted three different accounts before finally landing here. Now, all I have to do is learn the ins and outs and I’ll be good to go to make my contribution to the internet with my stew of depressed, excited, angry, “why me?” rants and raves.

Is this the part where I sign off? I’ve always wanted some neato way to sign off, but I’m just not cool enough to think of a super original way to do so... Guess that’ll be a project to work on. “How to sign off each post in an original, semi-brooding, not-so-pretentious way.”

xx Christine (okay, I just feel like an asshole. wtf does xx mean? Whatever, better luck next time.)