White Noise

   Sometimes, I have no idea where to start. My mind fills with so many racing thoughts. Somedays, I feel like no matter what conversation I'm having - I'm still thinking of cancer in some way. It is like a constant white noise being played over and over again. Someone can be telling me a story, and about half way through,  I realize that they are talking to me...ooops. I should probably tune in to what it is they are saying. Usually, at this point I just nod my head and say things like "yep", "Uhn Hun" ,"sure." I then recognize that I'm on auto pilot and need to be present with what is happening. I can't tell you how many times my mom has said to me "Well, you said you were going to do that today." Really?  I did? I have no recollection of agreeing to it or even having the conversation about it at all.
   I get to a point where my brain becomes mush. You can only hear so much crappy information for the day, before you brain is done, and doesn't except anymore to process. Sometimes, I notice that I'm not even thinking of anything at all. Or maybe, it is just that damn white noise that is always there, but I am so used to it - it really is like thinking of everything and nothing at all - all at the same time. Your brain reaches maximum capacity at a certain point, and that's when it is time for me to take a moment by myself and go off to my room to process what I can, in order to make room for the next days of noise and information.
   A perfect example of when I'm in this state of mind (mushy) was today at the hospital. I had an appointment with my nurse practioner, Suzie (who is a phenomenal woman, by the way) and she was talking about the results of my bone marrow biopsy- pretty serious stuff. I noticed how cute her scarf looked with her sweater, but all I could think about was that her beautiful scarf had a tag that was seriously sticking out, messing up the flow of her outfit. Luckly, I have a pair of mini scissors that I always keep in my purse. As Suzie is talking , I reach for my purse to grab my handy dandy, mini scissors and stop her from talking to fix this problem. I tell her what has been distracting me for the last few minutes. She starts laughing and I then take the opportunity to cut the tags off her scarf. Suzie's outfit finally flowed- which for some reason made me feel better.
   Now... I'm not sure if that event is a symbol of my subconscious saying "No!! I'm done for the day!" Or if it is just to keep things light-hearted during hard conversations. I'm sure it is probably a little bit of both. I know it may sound funny, but because I think so deeply everyday, all the time - it is kind of refreshing to talk about superficial, mindless things - which is why reality T.V can be useful sometimes. Usually reality T.V can piss me off because of the small stupid things that seem to shatter their superficial world. But sometimes, the very same thing can make me laugh, and make me feel better. It is fascinating to see these peoples lives and recognize the vast difference between their reality and my reality. It may sound odd, but there is a certain innocence with those people...ok maybe not with the drinking and swearing, but the naivety is still there when it comes to life and wisdom.
    Anyways, it's thoughts of WANTING to watch reality T.V or staring blankly at inappropriate things while people try to talk to me - that I know my cup is full, or rather my brain has reached it's mush point. It is then time to go seclude myself and process some of my white noise. I may not be able to get rid of the white noise completely, but I can definitely turn the volume way...down...and on the really, really good days, I can manage to put it on mute:)

Sick Caregivers

    A caregiver: Someone who devotes themselves to taking care of their sick loved one. My mother has fullfilled that role for me completely. Over the years, there has not been one time that I needed her, that she wasn't there for me. She is an amazing woman. But let us not forget that all amazing women and all great caregivers have their problems too. My mom has Degenerative Arthritis, Osteoarthritis, and Fibromyalgia. Those are just the "big things" - not to mention the bursitis in her shoulders and TMJ in her jaw.
   Before I was diagnosed with my cancer, my mom was completely healthy. She was not diagnosed with any of her diseases either. Over the years, it seems the sicker I got, the sicker she got as well. Is this purely coincidence? Or does being a constant caregiver of a loved one for years, wear on you more than just mentally? I'm guessing since it has been found that your mental health has much to do with how you cope with your physical  health - that it is quite possible this lifestyle caused her health to deteriorate as well. When I say this lifestyle, I mean her being a caregiver (of course), but on top of an already incredibly hard job, she is a single mother with two other children besides me, and the sole bread winner of this family with having one of the most stressful jobs of being a police officer- in the worst area in Milwaukee. WOW!! Was that a run-on sentence? Imagine the real thing... Essentially, she deals with people who scream and swear at her all day, who do not appreciate her service - deals with life and death, think on your toes situations at work , THEN comes home and deals with the tragic life and death situation of cancer. DAMN! Another run-on?
   This woman has the most stressful life I have ever seen - and yes -that includes me with the life-threatning illness. Needless to say, this woman needs a little caregiving herself. So finally, she is trying to catch up on her own health. This includes surgery she has been putting off for far to long- due to focusing on my health. My mom had shoulder surgery about two weeks ago on her right side...which is her dominant one (can this woman get a break?). I got to be there for her surgery, and take care of her afterwards. The role reversal is nice because we each get a small taste of each other's usual experience. Unfortunatly, I had surgery a few days later for a biopsy of my bone marrow and started a new chemo. I , however, am still more mobile than my mom is at this point, so I make sure I help her as much as I can - even feeling like crap. It dawned on me, that this is what my mom goes through all the time with me...It was very eye-opening for me.
    It's actually been quite comical around here. Which ever one of us feels the best tries to help the other. Two sick people taking care of each other- Now that is what I call HARD-CORE caregiving...
    My mom is also due to have jaw joint replacement surgery in the beginning of May. She won't even be fully recovered from this shoulder surgery! And who the hell knows what i'll be doing - my health status changes by the hour... I feel the need to give my mom serious props- she is a BAD ASS! I know that no matter how screwed-up we both might be, we will always be there for each other. Who says the sick taking care of the sick doesn't work? In fact, I say what better caregiver than someone who knows EXACTLY how you feel. Ok,Ok...maybe the sick taking care of the sick is a little over exaggerated, but regardless -us sick caregivers are not alone. Caregivers are human too. Although, sometimes I wonder about my mom...I've never seen a human being quite like her:)

The things people say

   I've been thinking a lot lately about what people say to make you feel better when you are going through a tragedy. Many try to say positive things, but sometimes it can come out ohhh so wrong. Now don't get it twisted, I like surrounding myself with positive people, but I also want honesty. I have only a small hand full of people that can do this for me. It can be a whole different story with most other people.
   One of the number one things that people say to try to be positive is "You are strong-you will be ok." I don't so much mind the "you are strong" but the "you will be ok" part is just stupid and quite honestly - dismissive. Did you really hear what I just said?! Are you listening to me at all?! There is a reason they call it "terminal" illness - and it is not because you are going to be ok. Sometimes, it is the most surprising when people of my own family say I'm going to be ok. I feel as though they are either in denial or they think I do not know the gravity of my own situation- so they lie. When it is those who are in denial, I feel bad for them and somehow have a need to comfort them. However, when it's people who know damn well what they are saying is a bunch of crap because they think that is what I want to hear- it irritates me. I would rather have honesty. Let me feel what I need to feel and quit trying to say what you think will make me feel better. I would much rather people say "I don't know what to say, and even if I did, it would not make you feel better." Because that is truth. Or something like "I love you, and will be there for you, no matter what" is also good. It is loving, supportive AND honest. Well... that is assuming that person will really be there for you- because some people have made that false as well. I do not need a magic statement to make it all better, because the reality is...there isn't one, and thats ok...
    There are also people who speak of the "Law of Attraction." The "Law of Attraction" is supposed to be where you invision the outcome of what you want with positive thinking and it comes to you. And with this "Law" people have told me that I have the power to choose whether I "stay" or "go" - whatever outcome I choose. Really? Is that so? So if I wish hard enough and absolutely, positively believe that gravity does not apply to me, I can jump off the Empire State building? Umm... I don't know about you, but I'm not willing to take that step. Besides, I think it is pretty freaking obvious which outcome I desire. I want to live!!!
   Another big thing that I do not particularly want to hear again is "Just have faith that God will heal you." Ahhh... that would be nice, but why would he/she choose me out of everyone. There are children dying everyday of cancer, why didn't God heal them? Is it really because they did not have enough faith? I find that does not sit well with me. The bottom line is - it's much better to be simple and honest. Just give me a hug or let me vent to you without feeling like you need to have to right response - there isn't one!! Sometimes just having the company of someone holding me without words, speaks louder than any other thing in the world.

A doctor...who?!... Me?!!

   Last night I started a new oral chemo. I did not think much of it - given it is something I've done many times over and is hardly "new" chemo. Infact, I've had this very same chemo before. It feels very normal to me to start chemo. I realize that I can not remember life before cancer. I was only 14 yrs old, when I was first diagnosed, and have had it ever since. I've had it throughout all the crucial growing up and finding out who you are stages of life. It reminds me of when a mother says that she can not remember life without her children or remember life before hand. And NO, I'm not comparing kids to cancer, but merely illustrating how life is forever changed and that YOU are forever changed to the point of not remembering what life was like. I don't neccessairly mean this in a negative way. We are meant to constantly grow and change. But I am so used to this way of life, that I can not imagine it any other way.
    To most cancer patients, starting a new chemo or treatment of any kind is a big deal. But I have done it all - every possible treatment you can think of. I have gotten to the point where I am the one who designs my own treatment plan. I decide everything and the doctors usually agree with me...actually they always agree with me. I seemed to have aquired enough knowledge over the years to make up my own protocol. There is a strong sense of power and control with being able to do that. Although, when doctors stop giving you direction and recommendations because "there is no right or wrong answer", it is the scariest thing in the world. When a doctor doesn't really  know what to do with you , it can be a pretty helpless feeling. But I began to realize that I know my body better than anyone else on this earth. I have ALWAYS been right about what is going on with me. So after the initial panic of having zero input from my doctor, I knew that I was the best doctor for my body anyways. I get to decide the "Western medicine" part of my protocol AND the alternative, "Eastern medicine" part of my protocol. Which, by the way, I would not have the more alternative options available to me if I only had western doctors to tell me what to do. I have the ability to pick and choose what I want and feel I need, for me to heal the best way that I know how.
      Doctors do what scientifically has been shown to work- which is great for some, but obviously has not worked for me. Now, I have the choice to do what in my "gut" is the best decision without having to explain away why, I'm doing what I'm doing. I have the ability to be and do what a wish. With a disease that is so chaotic and uncontrollable, I have found my control. I have the control to treat my body and heal it as I please...Ahhh....who needs a doctor? :)

Negative to positive

   Do you ever have a bad day,week, or experience and then you see someone who has it way worse than you do? It tends to make you feel better or somehow thankful for what you do have. Well, I'm finding more and more that I'm the person that makes others say "Damn... I guess my life isn't that bad." They say there is ALWAYS someone who has it worse than you do. That may be true, but I have yet to come across it. It is definitely a possibility that someone does have it worse than me, but somehow I do not think it is a probability... That is somewhat sad yet empowering at the same time. It's obvious why it would be sad, but the reason I feel it is empowering is because even though my life is more than a little hard- I am still making it work. I still have laughter and happiness in my life, and when I see people falling apart for much less, it lets me know I do have a sense of power and gives me the feeling of being able to conquer anything. Not that what other people go through is not real, raw emotion as well, I just am merely using the whole "Someone has it worse than you" but in reverse. It may sound like a weird concept, but it somehow gives me strength to know that even though I may have it worse, I continue to pull myself together and live- when others can not for a lot less.
    I always try to turn what may first seem like a negative into a positive. Of course, some negatives are much harder to turn then others. I'm still working on trying to turn cancer itself into a positive...so i'll let you know if I find out how. I would not hold my breath on that one though. In any case, I do the best that I can, and especially lately I feel like I've been getting better at it. Which is ironic because the negatives have been seriously coming hard lately- but practice makes perfect:) Quite frankly, I get so emotionally exhausted sometimes, I just have no more room in my mind for anything bad. Which leaves me no choice but to be positive.
   People have said to me "God doesn't ever give you more than you can handle." Now first of all, I would NEVER recommend saying this to a cancer patient...or anyone else for that matter. It is a bullshit saying. I handle what I have to because I do not have a choice in the matter. What is the alternative to not handeling it? Dying? If this saying were really true there would be no such thing as suicide. Just saying...because somebody has to. Luckily though, I have been able to handle my situation, but there are many others who have lost their lives to cancer- and I can tell you there is no fairness or reason to it at all. All any of us can do, whether a cancer patient or not, is to make the effort to push through crappy times and find laughter, and happiness but most of all inner peace. Life can be a merry chaos around you, but as long as you find your center and your peace, you have the power to come through to the other side. Negative to a positive:)

Simple questions...really?

   I recently went on a trip to L.A to visit my best friend Mina. I had a blast! But, I couldn't help but compare myself to others out there. Pretty much everyone is successful in some way, shape, or form- out there it is usually form. EVERYONE I came into contact with either owns their own buisness, or is getting their masters or doctoral degree. Don't get me wrong, it is nice to be surrounded by driven individuals, but me having cancer drastically changes my plans of success. In social situations- how do you say "Well, fighting cancer is my full-time job right now." How do you explain your future plans to new people without going into talking about cancer? I don't know what your experience is with talking about cancer, but for me, it tends to dampen the mood.
    In these situations, I usually say I'm a massage therapist because I am nationally certified- but I find people then like to ask "where do you work?" or "how many people do you massage in a day?" And of course because I'm doing radiation everyday I'm not currently working. Awkward. The most simple questions tend to be the hardest, especially if I don't want to get into everything. I can talk about travel, goals, and life in general - very in depth things with new people, but the simple questions are what really gets me.
   So needless to say, at first it was very intimidating to come across so many successful and might I add- competitive people all in one place.( L.A) After a while though, I started to realize I am just as successful in my own way. I have been fighting cancer since I was 14 years old. During that, I graduated high school with good grades and on time, then I went to and finished massage school, all while fighting for my life every single day. I have grown exponentially throughout the last 6 1/2years and have an appreciation for life that is unexplainable. I enjoy every moment, instead of constantly looking ahead to what I still need to accomplish. I have already defied the odds with my disease many times. Ummm...yeah, I think I am quite accomplished if I do say so myself:)
    However, it did take me awhile to come to this conclusion, and I do still occasionally feel the yearning to know what it would be like to finish college, get a degree and a normal life. OK...maybe I don't want a "normal" life- that would be boring, but you get what I'm saying. Ultimately though, I am proud of myself, and what I've accomplished. It is nice to have this self knowledge and although it will ALWAYS be hard to answer the simple questions, I now have the inner knowing that I am just as good as a buisness owner, pre-med student, or someone getting their final degree.