I see colors, I don't fear the choice

Sometimes we're only flying for awhile

These posts are never easy to start, but that's always been the way with writing for me. Maybe it's because I often don't know until I get going just exactly what I plan to say. I shunned outlines in college, and had to rewrite most of my introductions when I wrote my original thesis into something else entirely.

This post in particular I've started and restarted. See, there's something I have to tell you, and so many of my previous attempts have focused on trying to explain.

Forget it. I don't want to explain myself, and I don't need to, really. I know I've made the right decision, and my family supports me.

I've declined to pursue further treatment beyond palliative care. No chemo. No phase I trials in far-flung places. No flying out to DC to see national experts.

In some ways, it was an easy decision. Nearly two years ago, as I struggled to recover from the damage surgery, chemo, stem cell transplants and radiation had inflicted, I made a promise to myself. I promised myself that I would never, ever do this to myself again if it wasn't going to cure the disease. No more chemo. No more treatments that would make me feel so miserable, ever again.

I'm keeping that promise now.

I waffled, because I was scared. It took me a few weeks to admit aloud that I would not be getting treatment. It took a lot of thinking and some desperate prayer. But when I did, when I confirmed the choice with my doctors and my family, I knew I had made the right choice.

It wasn't just knowing that my logic was sound, my pro-cons thorough. It's just that I've hardly felt so right, so sure, after making a major decision, than I did when I decided not to pursue treatment. It was as if finally, for once, my mind and gut and soul were in perfect agreement about the right thing to do.

What happens to me next, well, that's out of my hands now. The thing is, it always was. No matter what treatments I do or do not have, the end result of this recurrence was always going to be the same. You may not believe in a higher power, but I do, and this has felt less like turning my life over to God than accepting it's been in his hands all along.

a promise kept

I see colors, I don't fear the choice

Sometimes we're only flying for awhile

These posts are never easy to start, but that's always been the way with writing for me. Maybe it's because I often don't know until I get going just exactly what I plan to say. I shunned outlines in college, and had to rewrite most of my introductions when I wrote my original thesis into something else entirely.

I was torn when sitting down to write today between a need to explain and the childish feeling that I shouldn't have to explain myself, but I've realized it's not so much the need to explain as the need for you to understand.

For you to understand why I'm not pursuing any further treatment.

Nearly two years ago, as I struggled to recover from the damage stem cell transplants and radiation had inflicted, I made a promise to myself. I promised myself that I would never, ever do this to myself again if it wasn't going to cure the disease. No more chemo. No more treatments that would make me feel so miserable, ever again.

I didn't say it aloud, or write it down. I told only one person, my friend Cathy the only witness to my conviction that I would not and could not go through the tortures of treatment again.

I started listing those tortures here, but honestly no list I make can make you understand. Not unless you've been through it yourself. Or you were there firsthand to witness how treatment hollowed me out, devastating my body and scarring my mind and hardening my heart.

I tell people that I am feeling well, that I'm doing okay, but for good on three years now that's been a lie. I've spent so many years with a broken-down body and diseased lungs that I think I I've forgotten what healthy actually feels like. The only "healthy" I know now is relative, but it's been enough. Enough to fake normal and push my body to do all the things I want to do, enough to go to school and have a food blog and go out with my friends and even dance a little at the bar.

Enough, as long as I don't catch any kind of illness. I've spent the last two weeks nearly incapacitated by a sinus infection; I can't get up the stairs to my own room without needing a break.

As long as I don't 

a place I never wanted to be

This is the story I never wanted to have to write.

This is the story I know will never have a happy ending.

Wait, no. This is the story of how I don’t get to have a happy ending.

Two weeks ago, I found out I have cancer in my lungs and my liver. My disease is no longer curable.

Let me be excruciatingly clear. This means, no matter what measures I do or do not take, I am eventually going to die of cancer.

I have lived with this possibility for a long time. The survival rates for relapsed Wilms are not exactly confidence-inspiring, but when I made it a year and a half past transplant I thought I may have landed on the right side of the odds. But almost eight months ago, I learned my cancer had relapsed again. I had surgery and radiation, and I dared to hope for the near-miracle of getting rid of the disease one more time.

The scientific part of me, though, couldn’t help but run the probabilities and know that gamble was most likely destined to fail. It’s why I kept radio silence about my latest relapse, only telling the people I see and speak to most often. I couldn’t bear putting on a hopeful face online, letting everyone think this was just a hiccup, when I knew so much worse news could--and likely would--be coming. 

There’s only so many times I can stand watching my news cause pain to the people I love. Please know, if I didn't tell you personally, it was only because the telling hurt too much to keep doing.

There is so much I want to say and so much I don’t want to say. I've felt so numb for so many months now, and with this latest shock it's hard for anything to feel real anymore.

In those moments when I do feel everything with clarity, I am overwhelmed with fear and anger and sadness and a deep, deep feeling of loss. I didn't know until now that you can grieve for your own life, but that is what I feel: grief for the life I had and all the people I love who I will lose, and grief for the life I might have had and all those dreams that will remain, forever, dreams deferred. It is an impossible feeling, this grief, and it is a feeling that makes me long for the numbness.

This is a place I never wanted to be, and it's hard to know what to say, how to tell this story.

I know what I have to say, and what I desperately need you to listen to: acceptance is not giving up.

I accept that the doctors and the MRIs are not mistaken; that, all miraculous occurrences aside, this disease will eventually kill me. Denying this reality only hurts me and the people around me. But just because I’m willing to accept this doesn’t mean I’ve lost hope. I still hope for a miracle. I still hope that I will be able to do so many more of the things I’ve always wanted to do.

I still find courage and hope in the love and support of the people around me. They make the days I have worth having, even as I ache at having to leave them.

My faith is a battered, fragile thing right now, but I still believe in things greater than myself. I still hope for better things to come. 

um...oops

Okay, so February was a looooong time ago. I honestly have no good excuses for the lack of updates, although I have been a lot busier so let's roll with that, shall we?

So I had scans again in May, and they were fine, stable, so for now I am all clear to start school. Dealing with that's been occupying a lot of my time. I found a place to live, and am moving out in two weeks! Which I am pretty excited about, even though it makes my dad sad. But it's really time for me to have my own space. He'll be more happy when he sees how much more room there is in the kitchen (I own most of the appliances).

Healthwise, I'm feeling a lot better overall, and I have a lot more energy than I did back in February and April. My lungs are still in rough shape, but I've been trying to get exercise frequently and it does seem to be helping. I'm still a long ways away from being able to run again, or hell, even walk briskly, but the breathing issues are taking less of a toll on everyday life.

I'm getting a sleep study in a week to see if my pathetic lungs are able to bring in enough oxygen while I sleep. Sort of like looking for sleep apnea; if this is indeed the case, I'd have to get one of those c-pap/bi-pap machines to help me breathe at night. Which, ugh. But it's only if the breathing at night is a problem, and if it is a problem, I'd like the solution, even if it's not the most pleasant option.

Plan from here is getting my venous port taken out in July, scans just before I start school in August, and then hopefully just a whole lot of studying anatomy.

So, yeah. That's all, really...none of this stuff about school and my new place really feels like a guarantee, I'm not far enough out to feel even remotely comfortable about my no evidence of disease status. To be honest, I have no idea when I'll even be comfortable, not after dealing with a recurrence, especially one that showed up after six freaking years. However, sitting around doing nothing while hoping the cancer won't come back would be so dumb it's not even worth talking about. And I'm not of the mindset to suddenly drop my plans because I might have died, or might still die. I'm not about to fly to Italy and become an artist or chef or something. For me, the bigger way to say fuck you to cancer is to live my life the way I wanted to do before cancer tried to screw it up. That's all I really want to do, and I'm not about to wait a year to indulge any illusions that that might be "safer."

I think this is the fastest I've ever written a blog post. Must be the guilt. And now I'm going to hit publish before I forget, and you all are left waiting another four months.

alive and sort of well

Right. I won't waste anyone's time making excuses.


November: Not a good month for me. Still recovering from the second transplant, I was tired and pretty useless all month. Also started struggling more and more with shortness of breath, which some tests confirmed was due to reduced lung function. Got food poisoning right before Thanksgiving.


December: Went on steroids to improve lung function, and started feeling much better. December was pretty much a blur of Christmas prep. I spent a lot of time shopping, wrapping presents, and baking (and eating) cookies. I also started radiation therapy mid-month, receiving radiation to the tumor site and to my liver. Radiation not bad at all, really. The worst side effect was fatigue. Side effects from steroids on the other hand...insomnia, heartburn, leg pain which woke me up in the middle of the night were all included.


January: Finished radiation last week. Saw the cardiologist. My heart function, specifically the function of squeezing blood out of my heart to the rest of the body, has declined since last February, and this might be contributing to the shortness of breath issue.


Many pediatric cancer patients go on to experience what are called "late effects," side effects that in some cases take years to show up but can be traced to cancer treatment. Heart problems are a pretty common late effect, because a certain class of drugs commonly used in pediatric cancer is known to be toxic to the heart. Other issues might include reduced bone density or impaired fertility. Not terribly common but still far too frequent are secondary malignancies: cancers caused by the treatment of the first cancer.


Normally, a patient with disease like mine (that spread to the lungs) would receive radiation to the lungs. However, because my lungs aren't working properly right now, and with no obvious cause, they really don't want to radiate the lungs and risk causing serious and permanent harm to my lung function. We might revisit radiation to the lungs in a few months if my breathing improves. Which is unfortunate, because that is going to prevent me from saying I'm done with treatment.


Look, the thing is, I'm technically in remission, which means that there's no cancer that they can see, which is good, many millions of times better than the alternative. But you know what, remission doesn't feel safe or comfortable, not even close, and it has its own set of worries. Because it could crumble apart at any second, the next scan could show this was all just a cruel joke. And if that does happen - well look, there are no more options, I can't just tell myself that we'll try something else because there is no something else. So I know if the cancer comes back, I die. And you don't just shake that knowledge off and move on. It settles in, becomes a part of you, and shadows everything in your life so that nothing ever looks quite the same ever again.


So now I move on with my life, because I have to, but I'm afraid to do too much, as if I'm taunting the cancer, just daring it to come back. I keep hesitating to e-mail school and tell them I'll be starting, genuinely nervous that to do so would be assuming too much. I know it makes no logical sense--I'm not usually one to put stock in curses or jinxes--but it's a feeling that's very hard to shake.


And of course, after I wrote this, I had an echocardiogram which showed something near my heart which is most likely my Eustachian valve, but I need a CT or MRI to know for sure. And if it's not in fact this valve...unfortunately finishing that sentence violates my "don't think about it" rule.


Then there's the side effects, the heart and lung issues I mentioned, and then just plain being horrifically out of shape. But that and the psychological baggage attached are topics for another post, which I swear will not take three months to write. Maybe I'll commit to weekly posts for Lent, so as to prevent this procrastination disaster from occurring again...but in any case, feel free to harass me if it looks like I'm slipping.