It is hard not to reflect on your life when you have taken the journey I have over the past 38+months. I struggle with not letting cancer define me, even though in all honesty, it has completely redefined who I am. And I know that in writing this, I will likely offend all of you at some point, or make you sad, or make you angry, or all of the above. Please know that my intention is none of those things. I am not writing this letter so that you will take pity on me or treat me with kid gloves. I am simply trying to be honest and say all the things that I never say when you ask me, "How are you doing? No, REALLY, how are you feeling?" Quite honestly, you probably don't want to know the real answer to that question, and you'd get tired of hearing me rant about what it's like to be "the new me" anyway.
You're right, I look pretty good right now. Thank you for noticing. My hair has grown back (and it is an awesome color); I have color in my cheeks again; I don't look like a sick cancer patient (because I'm still up about 35 pounds from when I started this journey. What I wouldn't give for clothes that fit). If you just met me, or passed me on the street, you would never know the road I've traveled. And that is weird to me. There are at least half a dozen people that I know now who didn't know me "before." Throughout my life, I will continue to meet people along the way who weren't there during the treatments that knocked me on my ass. They've never read what I am writing. They don't know that what I've been through has re-shaped my view of the world. At this point in the journey, cancer feels like such a defining experience that I feel like I need to wear a badge that says, "Survivor" or "I kicked cancer's ass" or something. Shout it from the rooftops? Maybe. Will it ever be something I don't feel compelled to start a sentence with? (I don't actually start my sentences with this, by the way, but there are so many times I feel like I have to). So maybe what I'm really trying to say is, you just never know the journey that anyone has been on or is currently traveling. Kindness moves mountains...maybe we should all start practicing more of it?
When I say, "I'm tired" in response to your question, here's what I probably mean:
a) I AM EXHAUSTED. I WANT TO CURL UP IN A BALL AND DIE FOR A FEW DAYS. I completely understand that I still have my family and home to take care of....is not helping. Some days it takes everything I have in me to feel like a functional human being. And I still cannot do half what I used to be able to do, that frustrates me. Folks, cancer knocked me on my ass. And then backed up and ran me over. And then did it again and again and again. The chemo regimen I had is called "the red devil" for a reason. There are days where I really and truly cannot get out of bed...for no real reason other than my body won't function. Still. And the PTSD-and/or-early onset chemotherapy related osteoarthritis that makes my body scream, its so loud it wakes me or keeps me from sleeping, pain induced insomnia doesn't help. Or the nightmares that ravage my mind and leave my pillow soaked.
b) EVERYTHING HURTS. Everything. And thyroid cancer turned lymphoma is a pain in the ass. Not sure why one day is better or worse than another. If I sit or stand too long in one position, I cannot move. Watching me get up from a seated position (at a restaurant, off the couch at home to go to the bathroom) is HILARIOUS. It takes sometimes 10-100 steps for my hip/knee/back/leg to actually function properly so I don't look like a 90-year-old hobbling down the hall. At least it makes the kids laugh when they see it.
c) I forgot the question, but you were probably asking how I was doing, so I reply with my canned answer "I'm just fine, thanks".
Here's the thing, every one "does" cancer differently. No two journeys are the same, and I am only speaking of mine. Do I wish I could dance the night away, right now? Sure. Do I wish I could have run a marathon during treatments? Actually, yes. Am I happy if someone you know has the energy to run a marathon during the middle of chemo? YES! I think that's terrific. But THAT'S NOT MY STORY. Chemo made me want to die. Curl up in a ball and die. I remember one stretch where I didn't get out of bed for SIX DAYS. I was either face down on the bathroom floor because I literally could not move or curled into the vetal position on my bed. And I'm sure that I'm so tired now because I wasn't very active during treatments, but save the lectures because I was too busy trying not to die to give a crap about getting exercise. I was way too exhausted to climb the stairs some days. Laundry room down stairs simply didn't see me for months. And I wish I was exaggerating.
When I say, "chemo: the gift that just keeps giving" in response to your question, I might mean a variety of things:
a) I am stupid. HOLY CRAP, legitimately stupid. I have NO ability to retain information. I cannot hold a conversation with anyone, especially with children mine, yours hers, and all others simply left in my care, or "well-meaning authority figures". It hurts me to listen to myself talk about books with kids now because half way through, I forget what we're talking about. Chemo brain rocks!
b) I am so ADD now, it's frightening. Squirrel.
c) Osteoarthritis BLOWS. Enough said. Okay, maybe not enough. I am too young to have this old woman's disease that bends my back and cripples my hands and feet. IT SUCKS.
d) It's hard to breathe sometimes...and not because I was trying to exercise. Probably because chemo damaged my heart and radiation damaged my lung.
e) I can't feel the bottoms of my feet ever. Or my hands sometimes. I no longer have fine motor skills. Opening a jar??? Bwahahaha. That's a good joke.
f) I have a heightened sense of smell. (No kidding, school science fair, I was a judge, in the gym. The minute I stepped out of the choir room (where we'd received our instructions) door, all I could smell was sugar, pizza, and sweat. Had to leave to vomit over the stair railing outside).
g) My tastebuds are shot (which really blows since I can smell everything now).
h) My hair has grown back thicker (yeah), curlier (boo...chemo curl sucks), and with no gray (yeah...although I color it so you wouldn't be able to tell anyway). Doesn't make any sense to me, but there's the truth of it.
i) I'm sure there are many other things which I'm just not remembering right now...because I'm stupid.
When I say, "I hate everyone and everything, or I'm just fine thank you," I probably mean:
a) I hate everyone and everything.
b) I am so tired.
c) I am sad.
d) I am angry.
e) I do not understand why everyone still cares about stupid, unimportant stuff. (Okay, I really do know, but I get frustrated when forced to confront someone who is taking dumb stuff way too seriously).
f) I'm trying not to say that my PTSD has kicked in and I'm trying to hold it together.
g) My body hurts, not in the general achy sense but it hurt, literally.
I'm angry? I'm sad?
"But why? You're all better now, right?" Here's the thing: PTSD is a bigger bitch than cancer. And I try really hard every day not to let it get the best of me. Or to let you see it. But the reality is, I am an emotional wreck. WRECK. I've cried twice while typing this post and I haven't even gotten to the stuff that's sad. I am at least able to see the panic attacks coming on now, but that doesn't mean they are any fun. Ask the family about the one I had out for a drive while we were out in the middle of nowhere. I'm sure that the four of them thought someone was going to die. I only have a vague recollection of the event, but it scared me. The best one was trying to have a rational conversation with my ex about my daughter going to camp, and My husband telling me to calm down when I wasn't actually upset, sent me into a crazy screaming tail spin that threatened to kill my marriage. Because my brain was telling me that the panic attack would go away if I could go in my room and hide like it was emergency exit...just to make the noise in my head stop, he followed me down the hallway. I screamed..... Not kidding. The kids sitting in the room next to me were really freaked out.
So, besides PTSD (which, is not just for soldiers, BTW, and which I really need to write about in a post all it's own), what makes me sad and angry?
Ignoring all the "what if the cancer comes back?!" "What if I don't see my kids graduate/get married/grow up?" "What if, what if, what if?" questions that constantly swirl in my head, here are just a few things that I think about...
I feel guilty about everything my family has had to go through, and the damage that it's done to their mental health. None of us will ever be the same, and whether that's a good thing or not, the trauma wrecked havoc and did it's share of damage.
I've watched friends from treatment, die....one after another, every month. I am angry for....being alive?! How is my life worth saving whereas there's aren't?
I get sad when I think of all the things that I want to do that I could have, and maybe should have, done long before now. Why was I waiting to check those things off the bucket list?
I lost a year and a half of my life. Literally. I don't actually know how old I am anymore. I answered the question wrong the other day when someone asked. Seriously. I played it off as I was teasing, but had no idea and had to count.
Cancer is isolating. Whether that's by force, or mitigating inherent health risks of hanging out with people who carry germs, I barely saw anyone during the entire time of my treatments. And now I'm so used to hanging out in my room, by myself, it's really hard for me to remember to be a member of a family, community, neighborhood...how to be a friend. I struggle with getting outside the shell that cancer created.
Treatments have bankrupted us. Not just emotionally, but financially as well. Actually bankrupted. We filed in January.
People including my husband treat me like I am broken,or lost or stupid or that I need someone to talk for me when all I really need, is for them to be quiet to truly hear.
I don't know if I am a survivor. The doctors sure don't call me one (I have to wait 5 years for that), but I feel like I should surely get a label for all that I've put up with! Or a special place in Heaven. Or a better dessert than everyone else. But I also get twitchy anytime someone calls me a survivor...like maybe they're jinxing it for me.
I think I'm a different person. And I desperately didn't want cancer to change me. But the reality is, while cancer did not change me, living through it has definitely made me a different person. And that makes it feel like I've let cancer win. I struggle every day with feeling like I'll always be "that cancer patient" in your eyes. And my own.
I am nesting in reverse. I am getting rid of EVERYTHING. And medical/science major me who took enough psychology classes in college can see why I'm doing it. I know that I'm doing it because I don't want my family to have to sort through all my things if I were to die. And because things don't mean anything to me anymore. But I can't stop. Just spent the last two weeks giving away ALL of my jewelry.
I am so mad that there is not a cure for cancer. And that people are still diagnosed with it every day. Research, people, research!!! I think the government has a cure and we are kept sick on purpose, so we remain loyal to the hand that feeds us.
I get so angry when I see that you are not living your dreams. Or you are unhappy. Or you aren't saying, "I love you" to those that matter. Or caring so much about things that don't matter. SERIOUSLY! Life. Is. Too. Short. And I know that unless you've lived through something like I have, you understand the words that I'm saying, but you don't really GET. IT. You think I sound like the teacher on Charlie Brown. But if you aren't happy, then what the hell is the point of being healthy????!!!
So, before I alienate everyone, I'll wind this up with a few simple statements.
When all is said and done, I still want to be me.
People often don't know what they are talking about. The more wrong they are, the louder they seem.
Cancer is not for wimps.
At the end of the day, there's no prize for being a workaholic, or the "perfect" wife/mother/family, or having the most stuff. Let it go.
Be happy. And let those around you be happy. Whatever that might look like.
Eat dessert first.
Say what you think and mean what you say.
Sincerely, best regards, etc.etc.