"Hello
from the Outsiiiiiiiide. I'm freezing over; soon you'll cryyyyyyyyy"
-November.
(November is such a plagiarizing cheat, Adele, I'm sorry.)
Actually,
we’ve experienced record warmth this year ("70s? IN NOVEMBER?" I
rejoice). But I know its only a matter of time before snow arrives (this part's
not so bad: it's beautiful and exciting and surfaces those nostalgic memories
of every first-snow you can recall), the dagger-like wind picks up (and due to
the fact that I am a paper-doll at the current moment, I fully expect to be
whisked away to some distant land in the clouds never to be seen again. I'll
write to let you know what it's like to fly, if I can find a pen and a reliable
carrier pigeon), and the dropping temperature will chill both my physical and
mental state into an angry Dark Ages. I hate the winter.
I
remember being young and exhilarated by the prospect of this time of year:
waking every morning with the glittering hope of a snow day, watching the
school-cancellations scroll across the TV; building underground tunnels and
igloos in the mountainous snow banks left by the plows; taking turns playing
Snow Queen with my sisters--and when our cheeks couldn't take it anymore: hot
chocolate and marshmallows awaiting us inside. It also meant that the holidays
were approaching, obviously. Thanksgiving and Christmas: highlighted with
melt-in-your-mouth sugar cookies, little red candles spinning the (German?
Swedish?) nativity pyramid on the kitchen table, and the smell of evergreen
wreaths when you walk through a doorway. Actually now that I've written all of
that, it doesn't seem half as bad. Nostalgia is a very powerful thing.
But as
you get older and there's no school days to be cancelled, snow means shoveling,
scraping ice off your car with numb-ass hands because you can't find your
gloves, sitting bitter and freezing as you wait for the engine to warm up, and
for me: being perpetually late everywhere because I always forget to factor in
how much longer it takes to leave (bundling up the layers, and readying the
car, see above). I've also learned something about myself in recent years: I
hate being cold. Not just that it's uncomfortable, but I actually get
angry. Like really, really angry when I am cold. It's as if my brain shuts
down in extreme efforts to focus on staving off hypothermia, and everything and
everyone is a noxious distraction from my every cell trying to zip up its tiny
winter jacket that the wind seems to blow right through. Not to mention the
time-change and ever-shrinking hours of daylight. As soon as I'm cold, I turn
into an ogre-ous (this is now a word. You’re welcome, English) form of Bekah.
It's terrible, and I hate this version of myself.
And on
top of all this (the impending Doom), I’ve also had some not-great (read: the
worst.) life things in recent weeks. I’ve written before about my muscle
spasms. Well, they’re reaching an all-time high/low, whichever/whatever. The
New Deal: about a month ago, my spasms went (quite suddenly) from a more intermittent
irritation (though still excruciatingly painful when they’d happen) to a
full-blown life-takeover. Every single day was a time bomb, counting down a
spasm clock with the launch procedure completely unknown to me. All I knew that
was at some point every day a part of my body will give up the ghost and submit
me to torturous agony, often setting off a chain reaction as other parts of my
body join in on this...escapade of debauched fate. (I am not exaggerating. I
have a high pain-tolerance and I try very hard not to embellish my experience
of pain. I have always been this way. This is the same person who unknowingly
tore her (first) ACL and couldn’t properly walk for 3 weeks and then couldn’t
squat, kneel or go up stairs without pain for over 8 months, but thought she’d
just ‘power-through’, and then ignored red-flags of a serious medical
condition, aka Cancer, for almost a year after that...dumb. So. Not an
embellisher.)
And
then every night, frequently hourly: spasms jolting me awake and I try to
untangle myself from a blanket mess/straight-jacket to launch out of bed to try
to quell the pain that I can only describe as my muscles attempting to break my
leg bones. Literally every hour. Clockwork, I tell you. This extreme change in
the frequency and intensity of the spasms scared me, and I spiraled real fast
into a very dark depression. My life was being taken over by an evil dictator
who lashed out erratically, but with enough regularity that I had to cancel,
reschedule or amend all plans and appointments for weeks- which in turn caused
isolation, which heightened my depression. And in addition, I had recently
started taking prednisone again in a seemingly last-ditch effort to regain
control of this body spinning off the road. Prednisone is a steroid/archenemy/med
that doctors throw around like candy. Sure, it can help a lot of things in a
lot of cases, but the side-effects both short and long term can be very bad.
Very very bad. Read: bone necrosis, for one. Steroids also F with your brain
and intensify any emotion you experience. Read: Depression. So, yeah. Spinning
wheel of Death, Brain-side.
I was
maxed out. I was maxed out on the pain, and maxed out on dealing with it. Every
time felt like the last time I could handle it, I just couldn’t do it anymore.
I didn’t want to do it any more. Most of my days were spent wishing I could
just be knocked out or put under so I wouldn’t feel it. When I wasn’t just
straight up crying (or screaming. I hate to admit this, but I sometimes scream
into my pillows so I don’t wake neighbors. These muscles are not messing
around. At all.) I’d just be asking god or my body or whoever could be
listening: Why? WHY? and then No no no no no no. Your brain can do some pretty
weird stuff when you’re in pain. I compulsively talk to myself because,
psychology. “You’re okay, you’re okay, you’re ok, it’s okay. It’s okay its okay
you’re okay” I call myself sweetheart, honey, my love, darling. And then
sometimes it’s the opposite; I curse out this god-forsaken body with a string of
uncreative obscenities.
And my
never-ending question is How HOW can non-existent muscles cause this much
suffering? There’s nothing even there to see (ie. paper doll), let alone spasm
to the point of my bones feeling like their going to break. It feels like my
body is trying to kill me, again. Cancer didn’t seem to work, so here’s the
next attempt. Or perhaps my muscles are in mutiny and seeking to prove that
they still exist in spite of me. I don’t know.
Well, finally after about three weeks
of these shockingly quick-changing unforgiving circumstances and my mental
state spinning out: I had one night of spasms so horrific, lasting so long and
attacking new and larger muscle groups that I had no way of calming down or
stretching to release, my parents took me to the ER. Of course as soon as we
get to the ER my body had relaxed, as is the way of things (I can’t really move
when a spasm hits, so we had to wait almost a half-hour in order to get me to
the car). I wasn’t upset by this, I mean, not really because I didn’t want to
be in pain any more. But it’s also difficult to explain to someone that, just a
few short moments ago I was in the most intense pain I have ever experienced,
by way of a now pacified and complete hypocrite of a body. The only thing I had
to show for it was that I was totally exhausted. The fatigue following these
episodes is obscene. They nodded. They took my blood. And my white count was
high. Read: infection.
They did a chest X-Ray which revealed
that I had pneumonia. I was admitted to the hospital that night and put on Big
Gun antibiotics to knock it out (TMI alert it makes your pee smell terrible).
With my still being immuno-compromised, pneumonia is nothing to mess around
with. More X-Rays, more antibiotics, more nights in the hospital. What’s
amazing is that I wasn’t presenting any signs or symptoms generally associated
with pneumonia. Nurses and X-Ray techs kept asking me how my cough was doing,
and I always had to answer them “I don’t have a cough” to which a quizzical
look was always the response. Especially when follow-up questions like
“Wheezing? Fever? Shortness of breath?” also got the headshake. What’s also
amazing is that the muscle spasms started clearing up as the spot on my X-Ray
did. They didn’t go away completely, but the regressed to about where they’d
been prior to the Three Weeks of Hell. I tried to be active, walking laps
around the floor- because that seems to help keep my leg spasms at bay- and
sitting in a hospital bed wasn’t helping the cause.
It wasn’t until the night before I came
home that we (well, my mom brilliantly sleuthed out) put together what I see as
a pretty clear understanding of what had just happened to me. Why my spasms got
so bad so suddenly, and conditionally why my mood spiraled out of control with
it. Of course now in hindsight I do recall prior to my transplant, my doctor
talking to me about chronic GvHD, and that if I did happen to have it (which
was likely, given I had an 8/10 mismatched donor), that it would likely have
“flare-ups” throughout my life, usually when I'd get sick. This happens because
when the body gets an infection, the immune system “wakes up” (as it should)
and goes to town on the infection, which causes symptoms (stuffy nose, cough,
etc). At least, that’s what a proper immune system should do. In my case,
because my immune system is transplanted and not my own, when it was triggered
to “wake up” because I had developed pneumonia (hurrah), instead of attacking
the pneumonia, my immune system got confused and started going to town on my
muscles instead.
Hopefully my immune system will
eventually feel “at home” in my body and not attack healthy things (like my
mini muscles). The goal of this transplant is that the donor immune system will
do what it’s supposed to do: keep my body free of infection, and keep cancer
from returning. That’s called CURE. They say five years in remission is when
cancer patients and doctors can start saying the word “Cure”. But I’m not so
sure if it’s the same numerical path for me, we’ll see. The hope is to be able
to get off of immuno-suppressants so that my immune system can reach it’s full
potential to guard me. That may never happen, especially because I have a
mismatched donor, and GvHD may be too intense (and dangerous) to ‘take the blinders
off’ my immune system completely. But that’s the goal. For now, knowledge is
power. Knowing and understanding what just happened to me has released some of
the anxiety and depression that wrapped so tightly around me for the past
month. If my muscle spasms (or my other,
somewhat-less-frightening-but-still-obnoxious presentations of GvHD: so far I
have five other ones) ever start to increase like they did this time
around—I’ll know, I probably have an infection and my immune system just
doesn’t know how to “do this” yet. The scariest part of it all (besides how bad
the pain was) was not knowing why it got so bad—and that it was so suddenly and
completely taking over my life for no apparent reason. Now I know.
I’m also taking other steps to build a
healthier identity. It can be very disheartening when I look back over the year
and it’s easy to chastise myself for not being further along than I am. I’ve
fallen off the 2015 Year of Health horse a bit, but I can’t let that control
me. I have to start where I am. I have begun PT for full-body reconditioning. A
harrowing task, but I need to do it for my health and sanity and soul. I am
starting to see a new psychiatrist and therapist closer to my home so I don’t
need to drive into Boston so often. I am actively trying to gain weight
(bacon). I’m doing research and learning how to be my own health-advocate (yup,
even 2+ years into this thing and I’m still learning how to do this). I’ve seen
a new transplant doctor at MGH for a second opinion, and he was very encouraging
that we are NOT running out of options to deal with my GvHD- something that was
told to me by my current team at DFCI. I am very grateful to my DFCI team and
thankful for everything they’ve done for me, but I’ve had to learn that not
everyone knows everything. It may appear obvious, but there you go. Lessons.
We’ve also found a clinical trial
researching chronic GvHD that is recruiting new participants. It’s through the
National Cancer Institute and the trial is based out of Maryland, so I hope to
head down there at some point to be a part of their research. In their list of
chronic GvHD symptoms, muscle spasms wasn’t even listed (my other 5 were) so I
almost feel its my duty to science and other transplant patients to inform the
research about this other form of GvHD #science. I know how important it is to
not feel alone, and I want other patients experiencing what I’m experiencing to
know that. So, to Maryland I go! I’m planning to contact them this week to
start the process.
I am also drawing upon the lessons on
self-care from last year, remembering what pulled me out from under last year’s
depression: surrounding myself with beautiful, life affirming things: poetry
and music, doing arts and projects, intentionally seeking out people and waking
up earlier to catch more sunlight. Active self-care is work, but if I don’t do
it, I will be doomed to the catastrophe of Winter. So I am Winterizing myself.
Building a network of people I love, reconnecting with people I miss. Rilke and
Rilke and Rilke. Making things with my hands when they let me, and leaving them
in peace when they rebel. Allowing and reminding myself to be where I am, free
of judgement and self-loathing. Stretching my muscles, watching the sky,
breathing deeply. Winter, there are no strings on me.
