Monday, February 27, 2012

Cleaning the Kitchen and Other Subversive Acts

Rules seem to be the main theme of having cancer. Don’t overwork yourself, don’t sleep too much during the day, don’t drink, don’t, don’t, don’t! Most of the time the rules are conflicting. I hear a lot of, “do not push yourself too far, unless you feel up to it,” “Stay away from spicy food unless you can eat it,” and “Avoid human contact, but do not isolate yourself.” However, the main rule-and one that everyone cannot seem to keep driving home- is don’t get sick. Chemotherapy knocks out your immune system so it is really easy to get sick. This results in a number of ridiculous rules mostly concerning the preparation and eating of food. They want me to eat vegetables but they all need to be cooked. Heaven forbid there be lingering bacteria on a pepper or a green bean, or, gasp, what about a little bit of dirt on a potato? I am supposed to peel all fruit with waxy coating before I eat it and avoid fruits that have surfaces that are not easily washed. Preparing food is especially daunting as I am supposed to make sure all surfaces are perfectly clean. How in the world am I supposed to clean everything if I am not supposed to come in contact with most cleaning supplies or the objects that are meant to be cleaned? This is madness. To hell with it, I am going to clean anyway. Not only am I going to clean, but I am going to eat raw vegetables and thoroughly enjoy doing it in a stick-it-to-the-man sort of way. That’s right, eating a salad is now an act of rebellion.

I view most of the things I do as acts of rebellion. It is so easy to give into expectations of exhaustion and sickness. I refuse to let myself give in. I have begun to do things. I am reading more, I sew, I cook and I have become increasingly more involved in my community through volunteering. All of these things I do as rebellion. Just because I am sick does not mean that I can’t. I am so tired of being told that I cannot do things or that I should not be capable of acting on my desires. I CAN do them and I will. So now, every single time I go for a walk or bake cookies or even fold the laundry I do it prove them wrong. Who are they? They are the doubters and the rule makers. I have to say it is quite fun to prove them wrong. I am doing well. In fact, one could say I am the poster child for chemotherapy. I am getting less worn down by my treatments as I become more used to dealing with and responding to them. My white blood cell count is ridiculously high for someone in this stage of chemotherapy and Sven has continued to shrink. He now resembles a large, squashed piece of taffy. Yes I am bald, I feel like have the flu, my skin is dry, and migraines continue to plague me at the most random times, but I refuse to let this get me down. I am a cancer anarchist.

My acts of rebellion alone are not the only things that keep me going. So many people help me to keep up my stubborn nature. I see their help as yet more acts of defiance. Every word of encouragement helps to keep me going. Every kind act and every little bit of compassion I see helps to propel me forward into my treatment with increasing resolve. I have an amazing grandmother who never fails to send me an inspirational card each week and friends that check on me with a regularity that is almost startling. One in particular who always Skypes with me even though I know she has better things to do. I live in a community filled with prayers and reassurance. I am never going to forget how my elementary school principal reached out to hug me in church this last Sunday when I broke down during “On Eagles Wings” (This song was way too much to handle in my current over-emotional state right now. Seriously, look it up!). My family is awesome. My aunts frequently call me, text me, or sit with me on my bad days. I have a wonderful cousin who walks with me regularly to help combat the effects of chemotherapy. There is an aunt living in Vermont who periodically calls to check on me and I have a friend in Texas who never fails to do so either. Every day someone does something surprising and wonderful. I am privy to so many acts of kindness that I cannot even begin to list them all. I am so blessed to be part of these people’s lives. Every time I hear phrases such as, “You can beat this,” “You can do it,” and “You are strong” I feel an overwhelming sense of pride. I am so proud of and thankful to have people around who also refuse to let me listen to the expectations of a cancer patient. These people have kept me sane and are continuing to do so. I am happy to have so many people around to help me stay stubborn. I am grateful to be a part of this rebellion.

Thursday, February 16, 2012

Chemotherapy is Crazy Shit

Chemotherapy is absolutely ridiculous. The second round of chemo went pretty well. They gave me better drugs to cope with the after effects. Having the worst flu ever is still better than my response to the first round. In addition to feeling better I have also started to notice some changes as my body responds to being repeatedly poisoned. The first thing was smells. I’m not talking about simply smelling something. Now I smell things. It would seem that as my sense of taste slowly disappears my body makes up for it by giving me the ability to smell everything. As my cousin pointed out, “It’s like you have a superpower.” To be honest, this is the worst superpower ever. Things that typically smell strong like garlic, mint, and onions are now way too much. Try being in an Italian household and avoiding the smell of garlic. It’s impossible. Other things I used to love are now less than pleasant. I used to enjoy going to the grocery store, but now, going to the grocery store is like preparing for battle. The epic battle of, “Please don’t get too close to me because I can smell you and everything I don’t need to know about you” battle. Seriously, a little bit of perfume is all you need and honestly, smokers, is it really worth me wanting to gag for you to light up? Besides, it gives you cancer anyway… This would not be so bad except for there are a bunch of other strange side effects that keep cropping up. For example, I can no longer tolerate red dye and there is a strange, acrid, chemical smell (that only I can smell) coming from my head. I also can no longer eat anything spicy or acidic. Which is a whole other issue because what I can taste I can’t eat and what I don’t taste I can. If I eat any more starch and carbs I might as well turn into a potato pancake. Food matters aside, there are more pressing things to worry about.

This last weekend my hair started to fall out. To be honest we all knew this was coming. To be even more honest we all knew just how very attached to my hair I was. No matter how much I might talk about being strong and above it all my hair has always been my one vanity. I would like to say that I handled this like a champ. However, on Friday, when it started to fall I was a bit perturbed. Actually I fell apart. It just started to shed, kind of like a cats fur when you have been petting it for awhile. I kept touching my head and the stuff just started to come out. Flash forward to me huddled in the corner of my couch with a blanket and my cat. I am crying while I slowly hold what were once firmly attached hairs in my hands. Clearly an melodramatic response to something I saw coming in the first place, but I’m going to say it was healthy just to make myself feel better. After several hours of this and mindless television watching my parents came home and I tried to pull myself together. That evening I was brought back to the real world by a phone call from a friend of mine who now calls once a week just to check on me. The simple act of talking to someone who cares for five minutes really did me some good and helped me kick myself back into gear. On Saturday evening, fed up with the constant shedding and anticipating the inevitable, I decided to shave the remaining hair off. You try waiting for all your hair to slowly fall out, it’s hard and I, for one, do not have the patience.

Shaving your head seems like a simple matter and not complicated at all. However, if all you have are some scissors and a razor that you had previously only used for leg shaving it can be quite complicated. The whole process took about two hours. First, my mom cut my hair off as close to my scalp as she could. The plan was to then shave off the rest with the razor. Obviously Shick Quattro for Women did not anticipate this particular use for their razor. We went through three blades before we finally came to a rough, but the job is done, stopping place. Man, is my head weird looking. I think I knew that I would not make a pretty bald person, but I now I know that I don’t make a pretty bald person. At last! I have finally achieved the quintessential cancer patient trademark. Not only do I feel like a cancer patient, but I look like one. This does open the playing field for all sorts of fun though. I have enjoyed my new wigs and playing with scarves. I also have this great little, white, lacy sleeping cap that my aunt gave me. So it isn’t that bad. Being bald also comes in handy when the hot flashes come.

Chemo-induced menopause is no joke. I’m sorry, but going through menopause at 23 sucks. Now, not only am I bald and sick, but I am also on a hormone roller coaster of craziness. I am not usually a cranky person, but lately the littlest things have me responding a bit more passionately than before. For example, normally I would be angry about such things as the Susan G. Komen Foundation taking much needed funds from women (if only for three days). On this particular occasion I was seeing murder and having hot flashes the whole time. I also respond to warm and fuzzy things in a way that could only be described as overkill. Picture me watching a public service announcement, crying and stating, “Oh, that just so sweet.” So please bear with me if my reactions to seemingly ordinary things are a bit over the top. In addition to these lovely emotional responses, I now wake up at about 3:30 every morning filled with energy. One problem, there is rarely anything to do at 3:30 in the morning. I have taken to wandering the house, reading and occasionally making breakfast for my family. If anyone has any suggestions for things to do at this time I would love them. Also, I need to include an apology here to every menopausal woman that I have ever made fun of for complaining about hot flashes. Holy Guacamole you were not kidding! I have the sudden urge to strip down in the strangest places simply because I’m so very hot. The sad thing is that I am so pale from the chemotherapy that the hot flashes only serve the purpose of making me look almost normal again.

So yes, chemotherapy is ridiculous. It has it rendered me bald, menopausal and given me strange superpowers of smell that I do not want. Aside from these things I now burn to a crisp at the slightest exposure to sunlight and wonder aimlessly in search of things to do at odd hours in the night/morning. Regardless of all of these things it is worth it. It is worth it because it is working. I do not need to tell everyone how scared I was about not responding to chemo. However, there is nothing to worry about because Sven has shrunk!! You really have no idea how exciting it is that my breasts are now relatively the same size and both fit in my bra again. This is good. So good in fact, that I don’t mind being sick for an entire week or going bald or even going through menopause at the age of 23. The fact that Sven is getting zapped and slowly shrinking from my life makes everything that is happening to me wonderful. I never want to contend with this ridiculous twist on mitosis ever again and I hope that after this I won’t. It is this hope, the hope of friends, and the hope that my shrinking tumor gives me that helps keep me going. I am half way through the worst of chemotherapy. Yes, there is still a lot more to come, but everyone keeps telling me that this is the worst part. If the best of the worst is that the worst is working, then I am all for it. Bring it on hot flashes, bring it on.