A Tiny Bit of Hope @tinybitofhope-blog - Tumblr Blog

Energy and Attitude

Everything in my life revolves around the concept of energy. It's been so long since I've been "full of energy" that I don't quite know how to compare it to those who aren't sick, but I'd guess that I operate on at most half the energy that most people do. This means that I have to seriously consider every possible move I might take, and weight it against how much energy I'm willing to give up for that activity. Do I want to go outside today? That depends; how well am I feeling right now and how well will I feel after I am done being outside? Did I do a lot of activity yesterday? Will I be doing things tomorrow? Is there any event coming up that I absolutely need to be at or that I just really really want to attend, and if so, how far away is that? Will the energy I use up today leave me too tired to function well at this upcoming event?

That's just a regular day.

On days when I actually feel sick, or when I'm feeling more pain than usual, or when I'm low on blood, all of those calculations are scrutinized even more carefully. I don't even move out of my bed or off of the couch without measuring that against everything else. This makes planning things in advance pretty darn hard for me, and you'd be surprised to learn just how much that affects my entire way of life. For one thing, I have to have friends that understand that I can't ever promise to be there for them. I'll try everything in my power to be there for big events and to at least be willing to lend an ear, but the key words there are "my power". I don't have much power. The simple truth is that no matter how much I want to be somewhere or be in the right mind-space for talking and listening, I don't actually have that kind of control. I can do a lot to TRY to be there - including setting time aside before and after any event so I can rest and recover, and simply willing myself to be well for that ONE moment - but these things are limited. It's taken me a long time to even be able to do that much, and it's taken a lot of stupid stubbornness to learn that I can sometimes just will myself to hold off on illness for a day! But it's not something I can rely on, and I risk making myself worse when I refuse to admit to myself that I'm not feeling my best. So I've canceled plans with friends much more often than I would like. Or I don't commit to things to start with, which makes me an inconvenience right away. Or I'll start to listen to someone's problems, genuinely wanting to help, but become a problem myself when my energy wanes and I can't keep my head up, or when the effects of chemo brain take over and I don't remember something that's just been said. I feel fortunate every time someone puts up with all of this, because I know it's not easy, and I'm genuinely grateful for every friend I have. They know me and know the reasons I cancel on them sometimes, and apparently they think I'm still cool enough to be worth the hassle. I can only pray they never find out just how geeky I really am and no one remembers that time in elementary school when I went around pretending to be a horse! …no one saw that, right?

The first step was letting go of negative emotions. I just don't see a purpose for them at all. They use up my energy, making them physically harmful, and they take away my will to keep fighting. It's easy to let negative emotions sweep you up, but it takes a lot to maintain them, and what would be the point of that? Instead of getting sad about having such a horrible disease, or getting angry that this happened to me, I literally chose to just keep going. You can't help what you feel - or at least, you can't help what your immediate reaction is. But you CAN choose to continue on with that reaction, or you can choose to change it. So when I feel anger or sadness or despair or fear, I literally make myself stop. I pay attention to my body and to my feelings at all times. I would have thought that would take a lot of energy, but it doesn't; it's like turning on a sixth sense, and just keeping it on and attuned to your body and mind. Then it's easy to tell when something begins to not feel right, and before I let it take over, I examine it and determine how much energy this is going to cost me. I know that sounds crazy - to put EVERYTHING in terms of energy like this - but I don't have the luxury of letting it slide. I think that's how people become caught up in drama and grudges and anger; they never have to worry about how much energy they're using, so they just let every single emotion that touches them take over. Then they keep at it! Instead of trying to fix a problem or smooth things over, they just hold onto the same damaging emotions. They aren't used to worrying about how much of a drain a grudge can be. Eventually, they might notice it, but they still won't be able to pinpoint what is causing their exhaustion. But I can't afford exhaustion. My body is already constantly under stress; I have no desire to add to it. So if something does make me upset, I either choose to ignore it, or I confront it, and I confront it in the least-aggressive way I can. I want to solve problems, not create more. Even if a problem is someone being extremely insensitive or rude - one of my biggest pet peeves - I still have to ask myself if confronting them is going to be worth the energy and if what I say or do will make a difference. If it will, then I will do it. But if it won't - and sometimes it won't, sometimes people will just continue to be jerks - then it's literally not worth my time or energy. That person, or that problem as a whole, immediately gets removed from my mind and I move onto other things. Because I choose what gets to get to me. I choose what matters. I choose whether I want something to affect me. It is my energy that goes into these things, and it is my energy to use as I please, and frankly, I'd rather it be used on things that make me happy.

#living with cancer #energy #attitude #positive thinking

Help, please!

I have a lot of ideas of what to write about next, but I could use a bit of a push! Here are some ideas, let me know which you want to see next - and maybe if there's anything you know of that you want me to write about, let me know. It could be specific incidents or just general topics or things I've shared before with you that made an impression. A few ideas: - Energy, and how it relates to everything in my life, including my attitude (aka why it's easier to be content/at peace than to be mad/hold grudges) - Knowing my own reactions better than any doctor can (aka I have studied my own body's reactions for more years than the doctor went to school to learn about medicine in general) - The 3 times I have been in need of an ambulance - The differences between being a child with cancer, a teenager with cancer, and a young adult with cancer - The power of stories - books, TV, movies, etc - and how they have brought meaning to my life and a reason to keep going I'm taking votes! Anyone have ideas/opinions?

Blood, Part II

I have easily had thousands of blood transfusions, if not tens of thousands. It's one of the most classic side effects of chemo. You've got your nausea, your hair loss, and then you have your low blood counts. Chemo destroys your body's ability to make the blood cells your body needs at the correct speed - sometimes stopping it altogether for a time - so as your cells die like they do all the time, there's no new cells to replace them with. That means that every time I go through a round of chemo, I'm going to have to rely on blood transfusions for a while until my body recovers enough to start replenishing its own cells. Until then, though, I might need a bag or two of blood a day.

#living with cancer #blood #blood transfusion #platelet transfusion #low blood count #stem cell transplant #chemotherapy

Blood, Part I

I would wake up a few minutes before 6 am, just long enough to toss on some clean clothes, and then my mom and I would be out to the car, on our way to Philadelphia. The trip should take a little over an hour, but that's never what it really takes - especially not in morning traffic. I never minded much, since I would have fallen back to sleep just about as soon as I shut the car door; I've never been a morning person. My mom would do battle with the jammed cars on the road and the construction that never ends, and if we were lucky, we'd be at the hospital at 8 am, just when the onco clinic opens. If we were not, I might have woken to my mom cursing at cars ahead of us, sometimes in the somehow-already-full parking lot of the hospital, other times still miles away.

I almost always know when I am in need of a blood transfusion. After so many years, I know the signs and symptoms specific to my body that signal a lack of the essential fluids running through my veins; I can even frequently pick up on extremely subtle nuances that tell me whether it's red blood cells or platelets that I'm low on, or both. A lack of red blood cells makes me tired in a more profound way than if I had spent all day running around; it is a bone-weariness, a sluggishness and a struggle to get your body to obey any of your commands. It is a draining that is visible in your coloring, as if you've been too liberal with white face powder, but then you take a second look and see that it's too evenly pale, everywhere, from your eyelids to your lips to your tongue and then allllll the way down to your toes. There is a craving of meat, of iron, of protein, a desperate want despite your fear that you won't be able to lift a fork to your mouth. A lack of platelets can do some of these same things, but the weariness is a little less deep, a little less even; my tongue tends to be even paler for some reason, but my face overall isn't quite so white. The bigger symptoms of being low on platelets are actually about too much color. Petechiae are burst blood vessels, and they appear as tiny red spots sitting underneath the skin. They aren't raised; they just look like strange freckles. I often get them on my legs, but they can appear anywhere. They don't itch or hurt or burn or do anything except look funny, but they signal an immediate trip to the hospital for me. Unexplained bruising is also another colorful sign that the platelets in my body aren't quite working at their normal level.The other big symptom of low platelets is really one I don't want to see, because it is any wound that just won't stop bleeding. When it's suspected that my blood counts might get low, I immediately am asked to stop using anything sharp, and not to scratch at anything on my skin, because even the tiniest wound won't easily heal when you don't have the platelets that clot the blood and make it stop. If I get to that symptom, depending on the size of the wound, it might be worth a call to an ambulance. Thankfully, that's never happened, but it will always be a possibility.

A lot of people would disagree with me about this, because a platelet transfusion works in the exact same way, except you are getting a smaller yellow bag of blood products and it can take as little as 15 minutes to complete a transfusion. So why in the world would I prefer blood transfusions over platelet transfusions? It's simple, my dear Watson; I was allergic to platelets. Technically, I'm allergic to the solution that they store platelets in, rather than the platelets themselves, but since there's no way around that, we just say I'm allergic to platelets, and need to be pre-medicated before a platelet transfusion.I discovered this fact about my allergy during my very first platelet transfusion, when we didn't yet know how I would react to any of this. It all started out just fine, and after 10 minutes, it looked like I'd be done with no problems at all. But of course, that wouldn't be my style, so just when the nurses had been lulled into a false sense of security, my body struck. My neck suddenly felt itchy, and just when I started to call for a nurse, my quiet call turned into an unintelligible wail. It felt like flames were shooting up into my face; I felt itchy and red, like I was choking or burning or both. All the time there was this scream coming from me, and I wasn't aware that I was doing that, I was too panicked. Nurses were swarming me but I didn't see anything they were doing; I think I might have seen my mom pushed behind them, having no idea what was going on any more than I did. No, that's not right; she knew less than I did. I knew fire was consuming me. All she knew was that I was fine one second and then screaming the next. I know she must have wanted to push past everyone and get to me, but at the same time she knew that the best thing she could do was stand back and let the nurses do their jobs, but sometimes that's the hardest thing of all. Within seconds, I felt the best rush of coolness spread through my chest, and then I could barely hold my head up, but I didn't care, because I could breathe, and someone must have pulled me from the flames. A nurse or a doctor came over and talked to us, I don't quite remember, but I know that we were told I had just experienced a reaction aptly known as Red Man Syndrome. They predicted it came about because of an allergic reaction, and heretofore, I would need to get Benadryl and Tylenol before every platelet transfusion. That's what they had just hit me with - good old Benadryl. It turns out that there's a very quick-acting IV form of Benadryl, and I became very familiar with it from that point on. I don't know what it is about Benadryl, but it's always had a strong effect on me, and IV Benadryl is more reliable as a sedative than morphine to me. In fact, the nurses learned this quickly about me, and sometimes used it just to help me sleep in times to come. But this was my very first encounter with it, and the only thing that kept me awake right at that moment was the adrenaline that still raced through my veins because of that scary reaction…although the adrenaline wasn't racing so much as it was running into Benadryl and struggling to push through the haze. They monitored me very closely during my second platelet transfusion, waiting for the Benadryl and Tylenol to kick in before starting. They didn't have to wait long; I felt the Benadryl enter my body even more so than the blood, and this time it was like a fog coming in, one big cloud that spread from my chest, and as its outer tendrils touched fresh parts of my body, I felt that part droop. My arms grew heavy, so heavy, and my legs became lead…and when it rose up my neck to my nose to my eyeballs to my brain, I felt the eyelids come down and the head follow suit, dropping down my neck. I would be asleep before I even had time to rest my head on a pillow, and I never saw a platelet enter my body after that very first time. Every other time, my eyes were already closed, and they would stay that way, even as the machine beeped 15 minutes later to signal an empty bag and a complete transfusion, and as the nurses unhooked me and told me I was free to go. Sometimes they would have to get me a wheelchair because I'd be too unsteady on my feet to make it down the elevator to the car. Other times I would hold onto my mom's arm, eyes like slits, never fully picking up a foot off the ground entirely, and then I'd sleep all the way home. Once home, I would stumble my way to the couch and proceed to sleep the day away. A blood transfusion may take 4 hours, but a platelet transfusion takes away a whole day.

#living with cancer #blood #blood transfusion #platelet transfusion #hospital days #thanks Broviac #shoutout to IV Benadryl

Perfecting the Art of Letting Go

I'm a perfectionist. I'm a control freak. I'm a classic Virgo. I am the kind of person who likes things done a certain way - MY way, the RIGHT way.

Or, rather, I was.

Maybe I can't say I'm NOT these things anymore. I think they're just a part of my innate personality, and always will be. But at the very least, I've learned to let go more.

This is no small feat. In fact, I would genuinely call it one of my biggest accomplishments. Being so fastidious - so choosy, so exacting - is exhausting, and while it could be seen as a good thing at times, the end results of all my fretting rarely merited that kind of enervation. The simple fact of the matter is, after being diagnosed with cancer, I couldn't afford to be as nit-picky as I was naturally inclined to be, so I had to adapt. That has ended up being a lifelong process, and I constantly still struggle with it - but I have learned to give up so many of my once-precious ideals of How to Live a Perfect Life that I finally started living. And let me say, life feels a lot more fulfilling now that I'm not just trying to fill it with perfection. For one thing, I don't have to worry about WHOSE idea of perfection I'm trying to meet! As soon as that stopped, I realized that the only person who even ever paid attention to that was myself - no one else was judging me based on how perfect I could make things. That was all in my head. Once that burden was removed, I felt so much lighter that things naturally came easier - and that makes sense, doesn't it? Who can work with all that extra weight you're carrying around? Now I was free to pick and choose what I wanted in all that space in my head that had now been freed up, and it all just felt like a bonus. Nothing but happiness went in there. It was a total win-win.

I've only ever been able to deal with things since my cancer diagnosis by examining each event as it happens to me. This means that I don't plan things in advance, and I don't waste energy on trying to predict what will happen. When you can't plan things, there's not much use in a lot of preparation, and that cuts back on my tendency to want to try to make things perfect, too. I know that, when something happens, I'll have whatever time and energy I have to spare right at that moment to react to whatever this event may be, and knowing that both the time and energy are limited, I don't feel like I have to be perfect. No one expects me to be. So why did I hold myself to such an impossible standard?

I don't think it's unreasonable to aim for higher than what is expected of you. Really, that's the only way to greatness. But I do think it's unreasonable to aim for something so far outside of your capabilities, it becomes a drain of energy and motivation instead of an inspiration. So go ahead and shoot for the moon if you've got a rocket! But if what you have is a broken-down used car, getting to the end of the street is an accomplishment. And maybe at the end of that street, you'll find a box of tools and an extra can of gas, so you can build up your car and aim a little farther on the next go-round. And if not, well, the least you'll ever have is your own pair of feet. I'm not saying it won't be hard to move forward with so little, but it can be done, and when it needs to be, it will be done. The key, though, is recognizing that this progress is most likely going to be sloppy and painful and messy. You have to learn to live with this. You have to be okay with letting life happen as it will, in great bursts and small whispers and long, drawn-out moments of steadiness and change, never knowing what will happen next or when something will occur. You learn to be happy with less, but you also learn to feel a fuller kind of happiness than you expected. You can see delight in the smallest of things, and that makes you okay with achieving small things of your own, instead of only striving for big ones. And most of all, you begin to see more possibilities in life than you ever have before, because you are not limiting yourself to the most narrow path of Perfection. You do not need to be the Best of the Best. All the things you thought you had to do to be a success aren't the same things you think you have to do now that you have removed yourself from that path. When sickness took away my ability to play sports at a competitive level, I began playing for fun. When my diagnosis took away my ability to attend school and then took away the focus that allowed me to stay in all my AP and Honors classes, I began focusing on the subjects I loved the most and stopped forcing myself to stress over the ones that I knew weren't for me. This also meant letting go of my grand dreams of the top colleges and maybe the top careers, too, but really, that wasn't what I wanted anyway. My ideas were not settled or fully formed yet, so I had been worrying for nothing. When it came time for college, I found I didn't WANT to go to a top college - not with the way my life was. I was taking experimental chemotherapies at the time - I did not want any of the added pressure that came with a big school! Eventually, I realized that I didn't even want college at all. It did not make sense in my life, and I was only forcing myself into it because I still felt that this what I was supposed to do. Even now I was still trying to fit my crazy world into one that more closely resembled that of the Perfect one I had envisioned as a child - a child who never once dreamed she would have cancer. It sounded good, but it wasn't real, and trying to make it real only made things worse for me. When I took a step back and examined it like that, this was obvious, but living in the middle of it hadn't allowed me to see. Stepping outside and, eventually, away from it was the best decision I made, though. As soon as I did, things began falling into place. I felt a million times more at peace and more centered; I still had dreams and goals, but I wasn't putting pressure on myself to achieve them NOW. I had to let go of my ideas of getting things done on a timeline, and I had to begin thinking of ways to achieve my goals in a way that fit my life as it is, not as I'd like it to be. I had to re-examine my goals themselves, and sometimes either set them aside (either for a future when I wasn't dealing with cancer or for good), or shift them so the end result may have the same meaning or feeling but the process might be different. For instance, I had thought about being an art therapist, which once sounded like a perfectly good goal, but my continued bout with cancer meant it was now unrealistic. So, upon examining it, I determined that really, my goal there wasn't so much about being an art therapist as it was to find a way to help other childhood cancer patients in a way that was engaging to everyone involved. Since then, I've become very actively involved in working with a childhood cancer charity foundation, which meets those expectations perfectly. See? Perfection can still be achieved sometimes! You just have to be open to seeing it in a way you weren't necessarily expecting.

That all being said, I still go crazy over a misplaced marker in a color-ordered box, and if I'm going to cut vegetables, they ARE going to be as exactly precise as I can make them. You just can't change who you are!

#living with cancer #perfectionism

Organization time!

I'm trying to go back and organize some of these old posts, but this is difficult! I'm thinking of switching to a different website for this anyway - I used tumblr originally just because it was easiest to manage for the few people I shared this with - but I never much liked Wordpress. Anyone have any other suggestions? I'm also trying to compile a list of my most frequently used abbreviations and medical terms, so if you see any that you want defined, let me know!

(Lack of) Progress

One of the hardest parts of continually living with cancer for so long - as opposed to being one of the lucky ones whose cancer responds quickly to treatment or one of the unlucky ones whose cancer quickly takes over (and please don't get me wrong, I'm thankful I get to live with cancer rather than have it take over) - is that I can't seem to make any progress. Or maybe it's that I can't measure any progress - but truthfully they feel like the same thing. What do I mean by progress? I mean having a sense that I am not just wasting away, and that whatever happens to me, I can come back from. Specifically, I am talking about physical well-being, and the strength that isn't measured by how much I can mentally stand. That already has been proven to me, and I am reasonably confident that I can mentally withstand just about anything. But physically, I can hardly stand at all. I can work hard for a while after a treatment or hospitalization and feel myself regain the strength I had lost to all my time in bed, receiving harsh medications that damage as much as they might help - but then I have to go get more treatment or I land back in the hospital, and there goes all that progress. All of that newly-regained strength is lost right there. So then I'll try something else. I have tried physical therapy; I began taking classes in yoga and Pilates; I joined a gym and went at least 3 times a week; I even took a few circus classes for something completely different. Each time, I could feel myself adapt and get better, even if I still couldn't touch my toes or pull myself up on a trapeze bar. But then suddenly I'd be back in the hospital and lose weeks or even months of muscle building to one week of being stuck in a hospital bed, where I'd be covered in IVs and forced to limit my physical activity. Sometimes I'd be so sick that I couldn't even sit up, let alone stand or walk. They'd put pressure cuffs on my legs to limit as much damage as possible, but a week of forced paralyzation WILL cause some atrophy; it just will.

#living with cancer #physical therapy #gaining strength

Right at this moment...

Friday, April 11, 2014 at 9:05 pm

RIGHT AT THIS MOMENT:

The muscles in my shoulders are aching and sore because I just started doing some gentle exercises a few days ago, hoping to build up more strength again.

My calf muscles are tight, but not as tight as they were a few months ago when it was so bad I had to use a wheelchair most days.

The outer part of my chest/side/back that relates to where my kidney lies ranges in pain from merely a bit uncomfortable to "Should I be worried about this?", but I'm getting used to it, because it's been that way since January, when my kidneys went into shock and miraculously came back out again, albeit with damage.

My mouth is constantly dry as a seemingly-permanent effect of the built-up toxicity of all the chemo I've been on over the years.

I have at least four cavities and a few other minor problems because of the dry mouth, but to get them filled, I have to go to CHOP so they can monitor the use of the anesthesia they give me - normally it would be fine but the anesthesia is disposed of via the kidneys, and since mine aren't doing too well, I have to be extra careful.

I don't have a spleen. That's long gone. Taken out of my body when it got inflamed during my 13-hour tumor resection surgery back in 2003. The spleen isn't vitally important, but it does help fight infections, so I'm down a bit there too.

My hemoglobin count as of last week is 9.8 - not at all bad for me, but not quite normal for most. But I only need a transfusion if that number goes below 8, so as far as I'm concerned, I'm great! You'd probably feel a little weak. I would probably laugh at you despite trying not to.

I currently stand at 4'8" (or 54 in or 137 cm) tall, and weigh somewhere around 65 lbs (or 29.5 kegs). I say "currently", but I've been this height and around this weight since I was 8 years old. However, I have weighed more than this before. At my best weight, I made it up to 80 lbs while receiving liquid nutrition through a G-tube in my stomach. Once that came out, the weight began trickling down again too, and it remains pretty steady around 65-70 lbs despite my large capacity for eating.

My high-pitched hearing is gone because of the permanent loss of the hair in my ears due to chemo. This means I can't hear the highest notes of a piano, or the tea kettle when it boils, or even certain vowel and consonant sounds, such as "s". If you say "s" I won't hear you. My brain still automatically tries to fill in conversational gaps, so I can usually tell when you are using it, but if you ask to go grab the apples and there are 2 right near me, I won't know if you want me to grab both or just one. It all gets even worse when we're in a crowded place or anywhere where there's background noise. Talking to me in a car is just about impossible.

My eyesight keeps deteriorating, and I don't know why. No one does, despite the many regular opticians and the very specialized ones we have seen. Did you know there was just a retina doctor? I did not, but now I do, and I certainly never expected a neuro-ophthalmologist's office to be so crowded. But it turns out they all run most of the same tests, and come back with the same answers: Your eyes are bad. We can't determine a cause, but wow how did you even get here? The answer to that is: Not easily, my friend; not easily. What I do know is that one day the lights seemed to be much dimmer, and then they kept getting even more dim. Things took on a murky brown hue that started canceling out my ability to see the true colors of things, and now I'm suddenly red-green color-blind - not quite fully but it's close. And mostly, I can't see at night. Not at all. If you've ever been in a place so dark you can't see your hand in front of your face, you know what it's like for me outside at night now. There is no "tunnel vision", nothing blocking the edges of my line of sight, nor any cloudy spots. With enough light, things are still perfectly crisp, and I can still read very tiny print with ease. But I need a lot of light.

I have zero chances of ever having a baby because my low weight and the continuous onslaught of extreme medication meant I never fully went through puberty. That would account for why I never grew, why I never had a period, and why I opted to get "reconstructive surgery" that was really more like "constructive surgery" - because cancer made me stuck in an 8-year-old's body and while it's nice to get a discount at the movie theater because they give you a child's ticket, it does get tiring to be handed a children's menu every time you walk into a restaurant - especially when what you want is a huge steak and maybe some alcohol. Okay fine, I don't want alcohol, it tastes like anesthesia to me, but if I did ever ask for it I would like to not be coloring on the kid's menu at the same time! (And let's face it, if you're given a kid's menu, you can't NOT color on it. That would be stupid.) So, moral of this little bullet-point item: I was robbed of my ability to grow in every physical way, and I was robbed of my ability to one day make a choice about having a child of my own. While I can't say I mind not having to deal with a period, I don't regret having made the choice to do something about what I could - and for me, that meant breast surgery.

I am physically weak, I get winded and tired quickly, and exercise to get myself stronger can be dangerous since I can't afford to lose more weight and it can cause pain and even larger problems if I'm not careful. But then again, if I don't exercise, that can cause pain and large problems too. I still haven't completely figured out this balance, but I'm forever working on it.

Some of these things are temporary; some are probably going to drag out for a while but might eventually go away; others are definitely permanent. But this is not an unusual day for me at all. In fact, I'd consider today a great day; the sun was shining, the weather was warm, I got to sleep in and rest in the morning, and then I got to be more active in the afternoon, ending the day with a dinner at the diner with my family. I was happy and smiling all day, because that's how I felt. All this other stuff? It's my background. I keep it there. The foreground is taken up by the moment, and the moment is good. Now this moment is good too, and this moment, and this moment. If I hit a bad one, well, it'll be over in a moment.

Unreliable Narration

I am a classic unreliable narrator. It's the truth. And so is what I write. I don't lie; I'm just telling my truth. The problem is, I sometimes remember things differently than what others remember, or what actually happened. I don't know. I'm telling it to the best of my abilities, but my abilities have been hindered by the very things I'm trying to explain.

#trigger warning: medical #cancer #neuroblastoma #childhood cancer #chemo brain

Identifying Cancer

I don't know when I became aware of the word "cancer". Even as a little girl, I remember knowing it, or at least knowing of it, even if I didn't quite understand all its implications. But I do remember knowing it was a disease - a bad disease, a scary one - and that I didn't want it. I can even remember seeing a child in the hospital on a TV show - Sesame Street, or Arthur, in one of the segments when they talked to real children - and they explained that she had this bad disease, but was getting medicine for it. The medicine made her hair fall out. At the time, I had hair that fell to my waist, and I never wanted to cut it. The TV show explained that the girl was bald but it was okay; she was getting medicine to make her better. I distinctly remember turning to my mom and saying something like, "Boy, if I ever got that disease, I bet my hair wouldn't fall out all the way because I have so much of it!" I seemed to believe that hair grew from the ends at the bottom, not the top, and the cancer medicine wouldn't be able to take away all of my hair since it was so long; instead, it would take it away from the bottom up, and I would be left with a short haircut. My mom didn't even know what to say to that. I must have been around 7 or 8. At that time, I was just starting to get sick myself, but I didn't really know it yet.

Until actual vomiting began. At this point I might have gotten a stomachache at any time of day, and it was usually quickly followed by the last food I ate. This is when the doctor's visits began, where we rapidly went through and dismissed simpler/more common ailments. Suddenly I was getting blood tests frequently, and I had not gotten over that instinctive childhood fear of shots and needles! What was worse was that they seemed to do nothing at all, except tell me I didn't have something that would be easy to diagnose and fix. As soon as these blood tests came back clean - and they always did - my current pediatrician would shrug and tell me I should probably go somewhere else for help, because he had no more ideas. Then I'd go to the next doctor my parents could fine, repeat the same blood tests, and get the same shrug and brush-off. A few tried some unique tests - one of them even did try me for stomach cancer - but they too would eventually become stumped. They began suggesting my problems were psychological. One even told my mom she was harming me by being "too emotional" and not just getting me psychiatric help. This is when my mother's "Mama Bear" mode first activated, and it's served me well ever since. She glared at that doctor and yelled, "You want emotional? I'LL GIVE YOU EMOTIONAL!" She went off on him, becoming my hero for real in the process. Enraged, she grabbed my hand and we stomped out of there, with every head in the waiting room turned toward us. It had now been years since I first started getting these stomachaches, and we were no closer to any kind of answer at all. Meanwhile, I was getting sicker, being forced to give up activities I loved, like soccer and horseback riding, because I just wasn't strong enough anymore. I hadn't grown since the first years of elementary school, and I couldn't gain weight. I threw up at least once a day and felt sore and achy every other minute. We had a right to be emotional! When, again and again, doctors just brush you off and decide you're not worth caring for, someone HAS to be emotional. My mother saw all of this. She saw that it wasn't a matter of me not eating; I ate perfectly fine, but I couldn't help it if it didn't stay inside of me. I wasn't making up any of my pain; I had every reason to NOT have this happen, but that wasn't up to me. Despite all of this, I still went to school and Girl Scouts and other easy-going activities, and I was well-adjusted. Most people at these places didn't even realize I had anything so severe going on, because I was a normal girl. This was not psychological. This was a medical issue, and we would keep pushing to get it treated as such. We had no other choice. I was beginning to waste away.

Pain

Everyday I feel physical pain. Usually it's something small, or what I would consider to be small. Others might argue with me there, but it's my pain, and I've had a lot of it; my ratings are a bit different. Getting a tattoo on my shoulder blade didn't even register on my pain scale, not when I've suffered chemo-grade nausea, and shingles, and the largest kidney stones some of the doctors had ever seen. Not when I had a 13-hour surgery that removed tumor that had been wrapped around my organs, waking up to find a scar stretching across my entire stomach to my side and my spleen removed. Not when I began a stem cell transplant with the harshest medicine they could get that forced me into showers every few hours because it was prone to causing burns, and certainly not when, despite doing all of that, I was burned so horribly they took pictures to put in a medical textbook, as they were the worst they had ever seen. Not when my brain has decided to black out certain memories like that because to even re-experience a glimpse of it could be permanently damaging to my well-being. But thankfully, that kind of pain doesn't occur that frequently. Instead, it might be a lot of little things. Sometimes it's one big thing. Sometimes it's a mix, and the worst days are the ones when everything feels engulfed in flames. There are aches caused by overactivity and under-activity, muscle aches and stomachaches and headaches. There is stabbing pain, burning pain, steady pain, prickly pain, throbbing and stinging and tingling pain. There are cramps and stitches and wounds and spasms, and after all of that, there is soreness and tenderness. I am constantly evaluating and re-evaluating where my level of pain is at, and if it's worth taking medicine for, and if so, what strength - is this basic "apply heat or ice" kind of pain? Do I take Tylenol? Or am I in enough pain to sacrifice the clarity of my mind and my ability to stay awake for something like Percocet? Is this maybe even a time when I need to get someone to take me to the hospital? And if so, do I get my mom to drive me or do I get her to call me an ambulance? Or am I already passed out and hopefully someone finds me and calls the ambulance because I'm a little indisposed at the moment?

But there are fleeting, rare, glorious moments when nothing at all is hurting me. Sometimes when I'm lying in bed or curled up on the couch, I manage to find a position that stretches my muscles in just the right way so that there is no pain, none whatsoever; in those moments I swear I separate from my body, even if just slightly. I feel so light and weightless that I am certain my self is hovering above me, barely tethered to the earth by my usually-so-heavy body, but now I don't feel it, I don't feel gravity, the pull to the ground, the aches or the pains or the physical sensations of being. Instead I am light; I am air; I am nothing but pure sense of self. And I don't know whether to be terrified or to stay forever in this nothing position. I am not in control but I am perfect; yet still I can't help but worry about when I come down, when I return, and I don't know if I want to or not.

#chronic pain #living with cancer

Dedication

Dedicated to all the hospital nurses and doctors and specialists and therapists janitors and room-cleaners and food workers etc that I have ever met, but most especially to my art therapist, Jen

Somewhere within the first year of being diagnosed with cancer, I began thinking about what I might want to do after this was all over - when I finished chemo and became well again and would go on to high school and college and a career. I think this is a big reason why I was able to endure as much as I did, and as much as I continue to do, because the only way through such awful things is to imagine a time when this will not be all you know. Plus, the future I envisioned always had me doing something to help others in my same situation, and that gave me an extra incentive to make that vision come true. It wasn't just for me; it wasn't even just for my family and my friends; it was for every other child, teenager, and young adult with cancer, and for all of THEIR families and friends too. It was for the doctors and nurses and child life specialists and therapists and all the other professionals who voluntarily came into the pediatric oncology ward every morning and proceeded to bond with the people who were there only because they had no other options. It was for all these people who actively worked to become obsolete someday; and I began to think I wanted to join them.

Right from the start I didn't think I had it in me to be a nurse; they are some of the toughest people I have ever met, and they all seem drawn to the career and fit it so spectacularly in a way I did not think I could ever encompass. Maybe I could be a doctor, but that too didn't seem to suit me all the way, and I knew my love of English and art weren't going to be the best fit here either. But I did start thinking a lot about my art therapist, and how she got to be working here. She was another big reason I made it through those first 2 years in the hospital, where sometimes it wasn't the pain that got to me but the utter boredom. Then she would swoop in with a fresh new set of oil paints just for me, or a bag of mosaic tiles and enough glue to cover the entire room. She didn't care how I looked or how many tubes were stuck in me; if I needed help, she'd sit with me and glue the tiles exactly where I asked her to without complaint. Or she'd help me figure out the best way to do it myself; if I had an IV in my dominant hand, maybe I couldn't squeeze a bottle of glitter paint, but she could put some in a tray and load up the paintbrush and place it in whichever hand I asked her to, and there was no judging if that day's art was nothing but scribbles reminiscent of a 2-year-old. If I wanted to be alone, she'd slip me a shiny box of pastels or a pile of magazines and scissors - it could be anything, I never knew what she'd have on that magic cart of hers - and quietly leave the room, letting me know that she could be paged should I need anything else. Is it really any wonder I wanted to be just like her?

Of course, things don't always happen the way you expect them to. As a girl diagnosed with cancer at age 12, I knew this better than anyone. I did get through the chemo, but the cancer didn't go away. I had to go through more treatments, each stranger and stronger than the last, but one day, although I wasn't all the way better yet and still had some cancer in my body, I was well enough to get out of the hospital and go to high school after all. I took pills at home that were parts of clinical trials, but remarkably, they did not have the same harsh side effects as all the medicines I had received in the hospital. We didn't know if they would help, but they seemed to be doing enough to at least let me live a life that felt more normal than living in a hospital. Not what I had ever expected, but I was happy to have it.

Pretty soon I began looking at colleges and, like all the other high school Juniors and Seniors, tried to think of what to do with my life. That dream of being an art therapist was still there, but it was fainter now. Life was different now. I still wanted, with every fiber of my being, to get better and help others with childhood cancer, but now I had to think of how I could best do that while I was still undergoing treatment of my own. In all my daydreams, I had thought that by now, the chemo either would have worked or it wouldn't have; I would either be fully healed or gone. I never dreamed that I'd be here, 5 years later, still on medications and going to the hospital and getting blood drawn and receiving blood transfusions and avoiding crowded places at certain times when my immune system was down and just generally living the life of a cancer patient. 5 YEARS LATER. WHILE LOOKING AT COLLEGES. Heck, the end of high school is hard to imagine for ANY 12-year-old, let alone one with cancer. I was lucky that my high school was so supportive of me, and granted me things like being taught from home on extra-bad days. Everyone in my town knew me and went out of their way to help. I was truly blessed. But college was a very different story. Not only that, but even if I did train to become an art therapist, I wouldn't be allowed to actually do my job; the health risk to me and to the other patients would be too great. I was being forced to think of something else, and I was utterly unprepared.

I know that a ton of students feel utterly unprepared to deal with what they want to do with the rest of their life; in fact, I could only think of a few people who seemed to know exactly what they wanted to do and were actively working to get there. But this was even bigger than that. This wasn't just switching my idea of what I wanted to major in; this was forcing myself to come to the reality of my life, that I had no stability and making plans was just about impossible. Everything hinged on how well I was going to be, and if I could even manage to enter a crowded building. It was hard to even think of how I would keep up with college classes and it was downright impossible to imagine keeping up with others in a hospital. I couldn't be an art therapist if I wasn't allowed into a patient's room; I couldn't even be a hospital janitor. I couldn't work in a restaurant or a shop or a fast food place if I couldn't give them a reliable schedule. I couldn't even stand upright for long periods of time without getting exhausted, and I couldn't be near a person who had the sniffles for fear of coming down with a cold that would quickly take over my weak immune system and turn into pneumonia. I couldn't even start my own thing from home because of all the energy that would take, energy that I didn't have to spare. I had just enough energy to do the work I was assigned to do at school, and sometimes not even that. Who was I kidding? I couldn't do anything.

After high school, which I did manage to graduate from, despite having to take off the last 2 months of school to undergo more surgery and recover, I took a semester off. While I watched my friends go away to colleges all across the world, I stayed home again. The good news was that I was accepted into a small college in NYC (thankfully, I had always loved school and my SAT scores were good), but I felt so far behind everyone else - physically and mentally. I didn't know how any of this was going to work. I intentionally picked a small college, hoping to become known like I was in my high school, so that when I inevitably needed some slack after coming down with another virus or suddenly needing another blood transfusion, the professors would be willing to help me out. But there wasn't anything set up in place like there was at my high school. They weren't required to give me any consideration at all. And I had decided to just take it "easy" and go with an English major for now, knowing it was my best subject, but not having any idea what I would do with that if I made it out of here. "If." That's how much this scared me. No longer was I envisioning getting fully better soon and making it out unscathed. I was already much too scathed for that. This time it was an "if", and I would be happy if I could even make it to that.

Things don't always work out the way you expect them to. I did go to college, starting during the second semester, and it was a very different kind of struggle than all the ones I had been through yet, but I did in fact make it out to the other side. Or, at least, I made it out to the other side of that semester. Right near the end of it, a routine scan during one of my usual hospital visits showed more tumor growth. I was going to have to go back and do some more serious treatments again.

But something in that single semester gave me hope again. I was away from my safety net of my family and friends, and even my usual hospital. I had made it, in one of the busiest and, in my opinion, greatest cities of the world, managing the usual college problems plus so much more on top of that. I already thought I was pretty strong, having endured cancer for so long, but now I was even stronger, because I could do it independently if I had to. But the part that really surprised me was that I didn't have to do it independently, because wherever I went, there were good people who were willing to help. I quickly became close with my roommate and her friends, and pretty soon, I was so comfortable with them, I was walking around without my wig, my chemo-bald head bare to the world, and I could take my chemo concoction in front of them without any awkwardness at all. They took me to my hospital appointments when they could, and when the doctor asked if I wanted them out of the room while we went over the gritty details, I laughed; there was nothing I couldn't say in front of them. And that one night when I came down with a high fever, shaking and sick to my stomach, they calmly flagged down a taxi in the middle of the night and took me to the ER, where they stayed even after my mother had been called and joined me. If I hadn't forced them to go to class, they would have skipped the next day just to make sure I was okay. So yes, college was hard, and I still didn't know what I'd do about the future, but I wouldn't give up that experience for the world.

Things don't always work out the way you expect them to, but I do think they always work out. You just have to shift your point of view until you can see it. I underwent more treatment, and there were so many more ups and downs health-wise for years after that. There still are. But along the way, I've met people and been put in places that are just right for me. Sometime after college, I became involved with Alex's Lemonade Stand Foundation, getting to know the people who work at this childhood cancer charity on a professional and a personal basis, and have built up a network of some of the greatest people in the world. With them, I've traveled the country and spoken at events big and small, doing my part to help others with childhood cancer. I never envisioned this, but it's still somehow exactly what I wanted to do. It turns out I'm pretty good at it, in a way that combines all my loves and interests, even more so than being an art therapist would have done. I'm now not sure that would have been the best route for me after all. I still adore my art therapist, but now I have even more respect for her. She was there everyday, putting herself into the middle of a room that had some of the worst the world could throw at a person, but she never showed it. She always seemed happy to be there, and that made me happy too.

Just the other day, I was watching "The Little Couple" on TV. I've watched it for years because I love the husband and wife it follows. They are both little people, but they have made so much of their lives and help others too. This past season, they adopted two little children, and they have been a happy delight to watch. But sadly, the mother was recently diagnosed with cancer. Every cancer diagnosis breaks my heart, and though I knew they would be showing her going through her treatment, I thought it would be no problem to watch. After all, I've been through all of that; it's not shocking to me. But I wasn't prepared for just how emotional I got when they showed her receiving her daily dose of IV chemo. She was curled up on the bed, just like I used to be, and though none of the tubes or wires or ports bothered me, seeing her whole body tense as the liquid dripped through her IV made me look away. I was stunned. I couldn't watch it. I knew that pain too closely. It had been years since I had had to go through that particular treatment, but as soon as I saw it enter her veins, I saw the same flinch that used to shudder through me too - the one you steel yourself for but are just never really prepared for, because your brain can't imagine that kind of torture. It can't. It needs to protect itself. But watching it happen overrode that circuit in my brain that wasn't allowing me to feel it; I felt it as she did on the TV, as if there was nothing separating us, or as if the drip in her IV was turning back time and placing me back in my own hospital bed. I could not watch. I could not sit there as someone else suffered in the exact same way I had. I could never have gone into the hospital every day and stood by with a smile on my face as these kids were being given a liquid poison that might be worth enduring, but might not. I just did not have the proper distance needed for a job like this, and I never would. What made me a good speaker at events - my passion and ability to explain all the horrors of what I endured in the hopes of making it out of there intact - was exactly what would have made me a bad art therapist, or nurse, or doctor, or hospital janitor. I remembered too much. I could slip in and out of those feelings just enough to inspire passion in others. But when directly confronted with it myself, I lost control of that ability, and the memories took over. My art therapist was a hero. So were my nurses and doctors and janitors! They had the same desire I did to help others, but with an extra special skill that allowed them to do so without becoming a mess. That's not to say they were robots without feelings, or that they probably didn't have days where they DID become messes, but somehow, they were strong for the kids when they needed to be. I've heard them say that the kids are their inspirations, but they don't always seem to realize that they are inspirations to the kids - and to this 23-year-old too.

#hospital stories #hospital workers #art therapy #pediatric oncology #neuroblastoma #my inspirations #my heroes

nypl

This Sunday, December 15, acclaimed author Neil Gaiman will present a memorable reading of Charles Dickens’ A Christmas Carol. Plus, Molly Oldfield, consummate researcher and author of The Secret Museum, will share some unique items and interesting objects found in NYPL’s collection...

tinybitofhope-blog

I just reserved tickets. (: This is kind of just what I needed - another event to help get me through till the holidays. I just realized I'm putting too much pressure on myself to make this year's Christmas a good one, not knowing what will happen health-wise after this. I'm still seriously debating about undergoing another harsh cancer treatment or not - whether it's worth it. Worrying about making that decision is what made this summer so tough for me, and I can feel it creeping back in on me...and what helped me out of it was fun things to look forward to. This is perfect.

Also, just a reminder, you can ask me anything about anything at any time - I know sometimes people don't ask questions because they don't want to potentially bring up a harmful subject or something, but for me, this is my life. I don't see it as good or bad, really. I just continue living. Asking me a question about what I am feeling up to, or what it's like to get a blood transfusion, or how I know I'm jaundiced - all of that is my average everyday life. It's like me asking you what it's like when you have a job, or what you do as a senior in college - for me, that's unusual. I don't know what that experience feels like. It makes me curious. No one seems to mind answering questions like that. And for me, questions about going to the hospital/dealing with illness ARE those normal things that I don't mind talking about. It's just what I know.

So, please, never ever feel like you need to sidestep around me. Please ask me questions! I don't go out of my way to talk about it purely because it's more likely to make others upset than it is to make me upset. I haven't come across a question I've felt uncomfortable answering yet.

Not much new, wanted to give a general update on my daily life now though so people know what to expect from me health-wise.

Still no new treatments or anything like that on the horizon, so it's still just me hanging out, feeling and looking generally well but definitely not perfect. I look a lot better than I feel, which is something of a bit of a miracle to me, just because if you were to meet me right this moment, your only comment would be, "Wow, that girl is really short." And that would be true. But it wouldn't even cross your mind that I was dealing with any health problems, let alone cancer - and not just cancer, but currently untreatable cancer that I've had for 10+ years that is slowly progressing. It just really blows my mind that you can't see any of that on the surface. Not a bit.

So what's under the surface? Weakness and lack of energy would be the biggest one. I can go full speed for a day, maybe even two, without much problem. But then it really starts taking its toll on me. I'd need a day of sleep to recover. So must days are a mix of a lot of sitting around and then some limited activity just so I don't go crazy. Too much sitting around makes me feel like a useless lump, just some growth on the couch. But too much activity can leave me aching and sore for days, even after a full day's sleep. I spend a lot of time reading, crafting (lately it's crocheting again, since the weather is cold), doing stuff on the computer, watching TV/Netflix, etc. I sometimes stay in pajamas for days. But if I feel well, I'll try to do other stuff too. I even get excited to go grocery shopping, just because it's a chance to walk around and get out of the house without too much stress. I love when friends are around and I can hang with them - usually go hang at a diner or something, maybe come back to my place and chill. Weekends tend to be made up on the spot, just participating in whatever might be available. Recently, I went to a play, I've had a holiday party with friends, I went to the movies, I've gone shopping, I've even been to random events like a Punk Flea Market and a Haircutting-Thon for charity. I try to take the day as it comes and just do whatever's available. I'm open to trying anything. I've done a lot of cool stuff that way, and it makes my life exciting. But, as always, I need time to recover from a lot of activity. I need to make sure there are places I can sit and rest, wherever we go. I always need to have an exit strategy in case I suddenly don't feel well.

Other things I deal with pretty regularly include night fevers and getting winded easily. The night fevers just seem to signify that my body is always trying to fight off STUFF. I've got a weak immune system prone to catching all kinds of things, and a lot of times my body starts getting tired at night and gets weaker, needing to work harder to keep itself protected. I might get small fevers of 99-100 degrees F, usually accompanied by headaches. Not much to be done about them. I take Tylenol (can't take Advil as it's a blood-thinner and I am still internally bleeding - that could cause a lot of damage), rest, drink a lot of tea, and that's about it. Sometimes it goes away quickly. Sometimes it doesn't.

Getting winded is a different matter. It has to do with the tumor in my chest. Over the years, I've sometimes had small spots of cancer pop up like this, and I've actually had a tumor pop up in this spot a few times. Each time, this is the spot that seems to have the most noticeable effect on me. It just makes me slower, and I get tired so much quicker than usual, even for me. Walking up steps. Walking DOWN steps. Walking in any kind of weather other than clear weather. Even just standing for long periods of time. I can't do it. My whole body starts to hurt and I start having more difficulty breathing.

Along with these things, I do still have to remember that I am internally bleeding, although that thankfully seems to have slowed down a great deal. But it does mean I have to keep getting blood tests drawn to check my blood counts, and possibly be ready for a transfusion of red blood or platelets. I have to pay attention to the signals my body sends me that by now I know really well. I can usually tell exactly when my red blood cell count has gone down enough for me to need a transfusion, and it's been a while but I could probably do the same for platelets too. When my platelets go down, I really have to be careful, because they are how your blood makes clots. Basically, without platelets, a simple razor nick would bleed forever. So I am not even supposed to use razors or nail clippers at this time.

One big thing particular to me and my cancer that I have to watch for is any signs of jaundice. Put simply, jaundice indicates problems with the liver. I already know I have problems with the liver; namely, my large tumor presses into my liver and weakens it. But because I am not on any medicine, since there is nothing for me to take, my cancer is only going to grow larger. That means it will only continue to push into my liver, and there is a very real possibility that it will eventually push straight through the liver, puncturing it and causing liver failure. This probably would not happen without at least some warning first - and that warning would probably come in the form of jaundice. Unfortunately, there really is nothing they can do for me at that point, since the only way to stop that from happening is to shrink my tumor, and that is exactly what we don't have the ability to do. But, at the very least, I would be able to know to get to a hospital where they could do their best to get me help in any way that's available to them.

All in all: I still feel pretty well. I still look completely normal. Looks can be deceiving.

I know I abandoned this for a while but I didn't know much of what to say! So now I've had another scan and wrote a long note to a few friends, and I figure I can share that here too. Hopefully this is clear - I wrote it to people who are pretty familiar with a lot of what I do, but I still wanted to try to add in all the details too.

Just finished my usual two-day rounds of scans. I went into this one not expecting any good news, because it's been almost a year without any available treatment. I haven't been taking anything at all that could possibly help, so we just knew this was going to be one of the hardest scans yet. This is going to get really wordy, feel free to read what you want and skip what you want, too. The first day of this scan process is just the day when I get an IV placed and then get the nuc med MIBG dye injected. That's the full day. The dye needs 12 hours to sit in the body before the scan. So the next day is the actual MIBG scan - 45 min of laying on a tiny board literally taped to it so I don't move. This is actually easy. I usually fall asleep or I can watch a movie if I keep my head tilted to the side the entire time. Unfortunately I now also have to get another scan too called a SPECT scan. The scan itself is amazing and takes incredible 3D pictures. The process is painful. I have to lay on the same tiny board but now with my hands above my head for an hour. After 30 minutes, it starts hurting. After 40 minutes, I usually start crying. It's pretty brutal. But the images are the most detailed ones they can get, so it's pretty crucial right now. After those scans are done, I wait a few hours for all the necessary doctors to look over the images, compare them to all others I've ever gotten, and then come tell me what they've determined. Yesterday went more or less smoothly at first, even though they had some computer issues and trouble with IVs. But in the end, they got the labs drawn that they needed, they got the IV in me, I got my injection. When I get home later though, I have an email from my nurse practitioner who tells me that my liver enzymes test came back "a bit off" and they'd have to redo them tomorrow. This was really weird because my liver enzymes are ALWAYS "a bit off" - or a lot off, really. My main tumor presses against my liver, always has, and has always meant my liver function tests (LFTs) come back elevated. So it was weird of her to mention them. It got me freaked out. There aren't too many reasons why she'd even bother mentioning them. But she didn't explain beyond that so I just had to wait until the next day (today). Today, I got my MIBG scan and it went fine. I was bracing myself for the SPECT scan when the radiologist decided I didn't need it. We actually argued about it at first because I knew my oncologist really wanted them done, but the radiologist was firm about it and I guess in this case he has final say? Idk. But hey, no 1-hour-long torture session for me! Then I got my labs redrawn and had to wait for all these results to come back. The final news: My LFTs came back today normal for me, aka elevated, but that was actually a good thing, because yesterday, they apparently came in with a reading of absolutely nothing. They were very very worried that my tumor had finally punctured my liver and caused it to start to shut down. Based on the "normal" reading today and the scan images, which show slight growth but nothing toooo much larger than my last scans 4 months ago, they think it was a fluke. But I'm going to have to be really really watchful of that. They also can't be sure. The SPECT scan would have been able to show better whether there is any puncture there, but for whatever reason, I was being unallowed to get it today. The lab technicians did, however, draw more labs to do some tests to see if anything shows up in my blood. So, the good news here is that I seem to have narrowly averted a major crisis. The bad news is, that same crisis can still occur, and there's really nothing I can do to stop it from happening right now. Still no chemo available. Still nothing to do to shrink the tumor. The small tumors I have and the main big one do appear a light bit larger and brighter/more active, but thankfully no new spots have occured. I'm still considering doing another MIBG treatment - the one that leaves me radioactive in a lead-lined room and causes a lot of side effects for months afterwards. It's not certain if that is even a viable option because I still have a slow internal bleed and the official cause of that has never been determined. I'm probably going to get another bone marrow aspiration/biopsy (super quick procedure where they extract bone marrow from my hips) to check to make sure no cancer has gotten into the bone marrow and to determine if there's any preleukemia. That last one is fairly common in long-term cancer patients who have been exposed to a lot of chemo and radiation - aka, people like me. While preleukemia could explain away both my internal bleeding and my vision loss, it would not be a good thing. I've had this test many many times and it's always come back clean, but it's one of those ones that can have a lot of false-positive readings so it's best to keep getting them. It's an easy simple procedure that'll probably leave me bedridden for a week but that doesn't bother me in the slightest. If it comes back clean, I'll be able to do something about the preleukemia and slow that down and probably get rid of these other side effects. It it comes back negative, I now know what is causing my internal bleeding and vision loss, but it'll completely rule out my ability to get the MIBG treatment, which is really my last chance option right now for the neuroblastoma. To be perfectly blunt, things are not good. But to also put everything else simply: I still feel well right now. I am not the strongest I have ever been, but my day to day living is still of a high quality. I'm not willing to lose that just yet to try the MIBG treatment which I know will make me feel awful. For a long time. I don't even have any pain on most days. My thinking right now is to get the bone marrow biopsy done and out of the way, and then still just keep holding on. If something else occurs - if I become jaundiced again (which will indicate more severe liver problems), if I start feeling pain frequently or strongly, if something just happens - then I'll rethink the MIBG treatment. But not right now.

And just to let you all know too, my mental health was bad this past year, but it's actually been a lot better recently. Pretty much because I've finally just made this decision, such as it is, to hold off on treatment until I am absolutely forced to reconsider. If I haven't seen you during my bad months, you'd probably not even realize anything more serious has happened. But it has, and I was really struggling, and I appreciate the help and love from you guys.

#cancer #neuroblastoma #no treatment #mibg scan

September, September

I've been dreading and fearing this month for a while now, which is a shame, since it's my birthday month, and one I usually look forward to. I like the change of seasons and the start of cooler weather. There's my birthday right in the middle, and it's also Childhood Cancer Month, which means I often have small events to attend where I get to work with charities and feel like I'm making a difference. But this year, September meant coming back from vacation and going right back into serious hospital mode. It meant I had to have made a decision about the MIBG treatment. To be honest, I still don't have one. But I'm feeling a bit better anyway. The last 2 weeks of August were given over to family vacation, and the rule was: no thinking about doctors. I didn't think that was going to work, but somehow, we kept ourselves busy just enough that we did a pretty good job of keeping it out of our heads. I went from worrying about the decision I had to make and flip-flopping every 10 minutes on just what direction I was leaning towards, to only thinking about it a few times a day and not even letting myself pick a side. It wasn't a whole lot, but it was enough. It made me realize that I haven't had a break this entire year. This ENTIRE YEAR. Every single week, I have either had a new issue pop up, or I have had to deal with at least one of those new issues. There was the worry about having no more treatment available; there was a lot of dealing with a hospital that has done nothing but caused me pain and never helped; there was internal bleeding, and kidney stone surgery, and there were MRIs and CTs and a bone marrow biopsy. There were frequent blood transfusions and weekly blood draws and labs taken. There was the sudden loss of my night vision, and the dimming of my sense of color. I could no longer drive or even just walk around at night. I was becoming weaker and losing more weight - and when you're starting at just 70 pounds to begin with, that's not good. I started getting major pains in my leg muscles. I have to take the wheelchair with me everywhere now. And then I'm told I have 3 new tumors and I have to decide whether to endure another harsh treatment that I may not heal from but can potentially get rid of all of this...I guess it's a wonder I wasn't horribly depressed for this whole year. Because this all happened without any kind of break at all. Just one thing and another thing and another and there is no time to heal or recuperate or just regroup and regain a sense of "I can handle this." I literally felt like I couldn't handle it any longer. I had handled it for 10 years of diagnosed cancer, and at least 5 more of undiagnosed SOMETHING, and this was just it. I was broken and I wasn't being given time to heal. My vacation was finally my chance to give my head a little bit of a break. I finally felt like I could feel myself breathe. I surrendered myself entirely to the moment, which is a skill I have cultivated and used over the course of my entire life, but which left me somewhere along the way this year, and which I gained back on this trip. I knew I had had an awful year, and I knew there was still a lot of awful in front of me. But right at that particular moment, things were good. I was going to keep enjoying it for as long as that moment lasted. Of course, none of my actual problems went away, and in fact I did have to give up one day of vacation to spend the day at the local ER, getting a blood transfusion. But even that didn't bother me. That just felt normal. I have a strange definition of normal, but it's a true one to me. Now vacation is over, and I'm feeling a bit more mentally together again. I still have an appt with my oncologist coming up, but my mom and I are putting together a plan that is making sense to me. I don't want to talk about it quite yet, but suffice to say that I'm feeling okay about things. That's more than I could have said before this trip, and I'll take what I can get. In the meantime, my 23rd birthday is in a little over a week, and I think this time I might get lucky and NOT spend it in a hospital and maybe even be able to go hang out with a friend somewhere. I might be in a wheelchair, but that's okay. And so am I. Or I will be. I'm getting back to okay.

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