I do not know what is right and what is wrong sometimes. I feel such anger. ..anger that I have to repeat myself time, after time, about my cancer. Every time I update someone about a tumor- they ask the same questions: What are they going to do? Whats going on? Whats happening? THE SAME THING THAT HAS BEEN HAPPENING FOR YEARS!!! It is a progressive disease... I feel anger that the most likely way I'm going to die is slowly suffocating to death. The doctors found at least three different areas of disease in my lungs. They always said that once Ewing's moves to the lungs its a whole new ball game. It moves quicker, and there is NOTHING to be done- so you wait...wait to suffocate...wait to die. I feel anger when those who are the closest to me fail to support me because of their "busy" lives...please, you don't know what busy is... But I always said that no matter what, I would not be that typical " laying on my death bed, sickly cancer patient" and I know that some how , some way- I will make that happen.
It is so overwhelming going back and fourth between what is "supposed" to happen with this disease based on what the doctors say and what I know I'm capable of, and all of the things I've managed to pull off thus far. I know I will be able to walk until the day I die..or at least couple days before I die...I'll leave room for the unknown. Having to talk to hospice is definitely a hard hit. I'm supposed to develop a relationship with them so I'm comfortable with them helping me die. Sure, thank you so much for helping me die...
I look at this from my brother and sisters perspective- how weird will it be to have strangers waking in and out of the house all the time. What will they think? Will they avoid being at home more? All the anxiety I feel coming along with all of this makes me feel like I can't breathe...or is that the cancer? Do you see what I mean? How do I find the balance with staying strong to live every second to the fullest and still take the time I need to grieve and be angry because I have a right to be? I don't want to waste what little time I have left with anger and sadness, but sometimes it is close to impossible to turn those emotions off. I feel like I have so much to say and do, but where do I start? How do you fit everything you want to do in life into...say....Two months? The answer is: you can't.
I guess I'm not so afraid of dying anymore, but rather how I'm going to die. How far will I fade or lose function? How bad will the pain be, both physically and emotionally? How bad will the torture be before I finally rest in peace... I still want to live and want to fight, but when it gets to the point where life no longer entails living, I want to be done and see what awaits on the other side. I know it may sound odd, but I have a feeling I'm going to be quite busy in the after life. I will have so many people to guide and watch over. Everyone tells me I'm such an old soul, I hope that is true, and that I learned my lesson in this life. Hopefully with an older soul, I'll be more familiar and some what more talented with communicating to my loved ones left behind- that is extremely important to me. I need to be able let those I love know I'm always there. I want them to always feel my presence, but in case they are blocked in some way, I came up with a couple major signs. One sign will be books randomly falling off the shelf, even though no one has touched them- oh and if they happen to fall open to a certain page- you might just want to read it;) or keys falling off the table. But my major sign will be purple flowers- especially orchids popping up in your yard or even just randomly coming across them in a way that you are compelled to notice. My favorite color is purple, it is supposed to be a very healing color for cancer...Maybe it invokes more positive thought, but I always feel good around the color purple. I always take significant displays of purple around me as a positive sign that I'm headed in the right direction and I have my own "guardians" watching over me.
I have been seeing a lot of purple and purple flowers lately, so although I can be angry and terrified sometimes deep down I know everything is going to be ok no matter what happens. All I ask for, is to keep seeing purple over the next couple months to keep being reassured that I'm not alone...
Thursday, September 15, 2011
Thursday, July 14, 2011
The Last Stage of Grief?
Acceptance. Acceptance is the last stage of grief. I continually find myself circling around this term. I accept that I have a devastating illness that affects my everyday life. However,I can not accept losing my mobility, and slowly wasting away. I can not accept dying with out having experienced being in love, or having my dream career come true. Although, I DO accept dying, I do NOT accept dying possibly before the age of 21yrs. That I will not accept.
I believe that acceptance has multiple stages - just like grief. You start to accept the tragedy you are put through at different levels. For example, I can accept my disease as a whole and that I will most likely die from it, but I do not accept NOT being able to do things that others my age can do. I will be told by NO doctor that I shouldn't run, or that I should use a cane to help me walk. Well... I may be told those things , but I'll be damned if I listen to it. I firmly believe that me not listening is what keeps me alive and going - for if I accept that cane - that is what I will receive and begin my decline. I will not accept that.
I guess I've learned that acceptance can be both good and bad, and both healing and deteriorating. To accept something you can NOT change, can be quite freeing, but to accept defeat in a situation where options are present and possible is simply fear. I refuse to be afraid. I do not accept the ideals of what a cancer patient should be or look like - I never did - from day one. There are many things that I have not accepted over the years and as a result, have defied so many odds. After reconstructive surgery to my arm, there were going to be permanent mobility limitations- such as not being able to reach over my head, do push -ups, or throw a good left hook - and I'm proud to say that because I didn't listen to, or dwell on the odds of others - I can do all of the above and in addition practice Brazilian Jujitsu. Yeah... I'm bad ass:) Here's a true story to further my point... About 1 month after my reconstructive skull surgery and back on both chemo and radiation, I beat a 250lbs man, fully trained in Brazilian Jujitsu, in a fight. There are no words to describe how I felt other than BAD ASS!
So although, acceptance is a necessity for resolution in oneself during times of grief - there is a fine line to be drawn. One thing my mom said, that I will never forget, even though it was in reference to guys at the time was " What you accept is what you will get." So simple, but so true and applies to all areas of life. Sometimes there is more than just acceptance, sometimes you can say to hell with that step- I make my own way. That ultimately, is the reason I am still alive and people never believe me when I say that I have cancer. It is also the reason I get dirty looks when I park in handicap- even though I have a valid sticker...but I just smile because it means I have defied yet another person's expectations:)
Thursday, June 30, 2011
What's Real?
I find myself asking "What is real?" Is energy work real? Is meditation real? Or prayer? Is there such a thing as a higher power? Sometimes I find it hard to imagine that some things in this world are just "meant to be", or even that fate decides where you go in life. It sometimes makes me feel more helpless- walking on the path that I am on. I have a huge life- threatening diagnosis over my head, and I do my best to keep myself healthy, active and happy. But when the docs give you less and less TIME- It hurts. How could it possibly be meant to be that I may not ever find love and get married, or have the experience of children.... How could my fate look so gloomy?
First of all, I have my own situation to look at: Constant tragedy and tumors coming quicker they can be treated. But then I also look at some others' lives as well. One of my mom's friends had breast cancer. She ended up having a double mastectomy because she happened to carry the gene that was more resistant to treatment, and has higher risk factors. Luckily, she went in to remission...but the universe was not done with her either. This woman has had serious back problems and had to have surgery- which worked for awhile...But apparently she needs another surgery to help fuse her discs. Oh, but that is not even the worst of it.... As if things were not devastating enough, she found out her brother - who she was very close to, and supported her throughout her journey with cancer- had drowned and lost his life....while he was on vacation. What the fu$#k is wrong with this world!!!!!? I can not imagine losing that kind of support and friendship....No, screw that- I can not imagine that period. The shock is undeniable. From their parents point of view- they spent so much time fearing for their daughter's life and BAM their son is the one who loses his life. My mind can not wrap around this situation. Fate could not have chose this...the universe or god could not be so cruel.
I think about some of the things that happen in third world countries, and about the devastating tsunami that hit Japan, I also think of all the meaningless wars that start, unfortunately because the very leaders of some of these countries self- sabotage. How do these "leaders" come to power? How could "God" let these things happen on such a profound level?
This is why I am continually left with more questions than answers. Is God real? If he is, why does so much evil run rampant? Sometimes I CAN have such moments of peace, faith, and assurance. But it is always closely followed with moments of chaos, devastation , and loss of faith. Is it possible to have more than just a moment of faith and peace? How could someone attain those feelings for an actual period of time?
Another thing that baffles me is-why people like my mom's friend, myself,and my mom are forced to deal with constant tragedy- yet there are some who will never encounter more tragedy than simply not getting their favorite car or having a horrible time on vacation because they didn't use sunblock. How can there possibly be such a vast difference between people and what they have to go through.Now I'm not saying that everyone doesn't have a story to tell- but every now and again some stories can balloon out of control to the point that you feel forgotten by anyone that could possibly be of a higher power. Meaning, in the most simple terms- I feel neglected by the universe, God, and fate. And really, all of those things are one in the same.
I use to wonder if I was a horrible person in a past life, and my karma is coming to get me now. Only because I want so badly for there to be some explanation for the pain that has been bestowed upon me and my family. But my thoughts go far beyond myself. What about all the children who die from violence, cancer, and aids- Who decides that? The answer has to be no one. There is no power or entity that could ever decide such things. I understand there is a lot to learn in life, and life IS a journey, but some things are just unthinkable.When some one is forever surrounded by tragedy- they tend to get numb to it and oddly enough , regress back to where its hard to appreciate life again---they no longer follow the journey.
To better illustrate my point, I'd like to tell you another one of my experiences. When I was in the hospital for my stem cell transplant, my mom and I met a brand- new mommy. When I say brand-new mom, I mean she has a new born baby there in the hospital . This mother found out her baby had leukemia right away....the baby never even got the chance to leave the hospital and be home before he died. I'm sorry if I am being too heavy, but you can hopefully understand that with some of the things I've witnessed, it does make me question the very nature of life. What did that baby ever get to learn? Was the baby just meant to be someone else's lesson- If so - how crappy is that? You get sent to earth just to teach someone a quick lesson and then you die!
Some people say we choose our lives before we even get here...yeah, right! I refuse to believe that one. I just do not think that all the bad, horrible things that happen to people- from rape, to torture, to cancer, to murder- is something that all these people chose. I guess, ultimately, I wonder how much control we have over our lives. Is it all a sick intricate design of fate or are we just living with absolutely no help out there from the "above?" Is there even an "above?"
In all honesty, I needed to vent these things out because I'm so sick of bad things happening to not only me, but everyone around me. It is so much easier to keep positive, happy, and have some kind of faith in something, when you see good things happen around you...even if it is not to you. In the big picture, I do believe in people- well...some people- and also those brief moments when I'm at peace, I believe in a higher power. My peace and faith would be renewed, if even just the people around me could catch a break. At least, then I could witness happiness even if it wasn't for myself. Now, I'm not saying I don't want and deserve happiness as well, but happiness can be contagious. So being around it more would be very inspiring in itself. So I guess it is up to someone in my circle or myself to start the happy ,healthy, healing train. Now which one of us is up to it?.... Anyone?.....
Sunday, May 15, 2011
Empty Shells
What is it that causes an empty shell? An empty shell: A person who is empty on the inside- their soul striped away by the constant beatings life can give. It is one of the most sad things to witness someone go from their "normal" lively self, to a hopeless empty shell. To watch someone become just a shadow of what they used to be...How do you get them back? I've watched very few loose themselves to this degree- which I am thankful it is only very few. The sense of hopelessness in the aura of these people is so thick and obviously devastating.
I have to say at one time I was an empty shell. Just moving through one day in order to go back to bed for the night. It is hard to break the cycle, but I did do it...eventually. Luckily, I had people who love me to point things out for me. I wasn't joking and smiling like I normally love to do. I noticed that I lost interest in dancing and working out- some of my very favorite activities, that would relieve stress and make me feel better. I eventually realized I had no social life, no outlet to let the pain release.
The root of an empty shell is devastation. I struggle with how to describe devastation... there are NO words to describe the feeling of devastation. It is only understood when experienced. Which... isn't that the catch with learning all great emotion? Devastation and tragedy can be tools to helping... no not helping, but rather FORCING the soul to grow. Usually people experience at least one great tragedy in their lifetime. But what about those of us who ALWAYS seem to be in a storm of tragedy? I have learned an immense amount about life over the years of battling cancer- but when does it end? How much devastation and tragedy can one take and still continue to learn from it. I have had nothing but bad news lately- and my past experiences are what help me cope with these current ones. So what am I learning now? I am not trying to be a "debbie downer" but at this moment I can't see the "lesson." There could very well be one, but I sure can't see or understand it with the way I feel...which is devastated and empty.
On Friday, I found out that my right hip joint-that has been hurting me and causing me to limp- has a tumor. This of course did not surprise me because usually where I have pain a tumor then pops up. Radiation is what usually helps my pain, but this time the doctors were hesitant to do that because of all the treatment I've had that has affected my bone marrow already. I've been radiated in my hips before and it caused a certain amount of fibrosis or scar tissue in my marrow. This causes me to have low blood counts that will be permanent. I felt like I had zero options. But I guess they(being the docs.) had a conference and decided they could do radiation but with a different technique. This technique involves giving me lower doses or less treatments to hopefully save my bone marrow but does not have as good affect on killing tumor...or something like that. I also have a risk of my hip breaking because A) the tumor is eating away at it and B) the radiation can make bones more brittle. If this break were to occur, I would need a hip replacement. Yeah...a 20 year old with a hip replacement ...I can see it now...NOT. Even if my hip were replaced it still brings about the problem of the bone marrow- because last time I checked, fake bones do not make marrow. The doctors can transfuse platelets and red blood cells which gives me a boost for about a week. Actually, Wednesday I spent 8hrs... not 2... not 3 but 8hrs being transfused- so you can see why I might not want that so often. But even worse than that, is they can not transfuse white blood cells so if my body were to stop making them- an infection of some kind would be inevitable...and I would have no defense against it.
Needless to say, I did not receive the slightest bit of good news the last couple of days...and trust me I was looking for it. My brain is fried, and most of all devastated. I'm doing a whole lot of staring into space. As I was having this crappy, horrible conversation with my doctors, I luckily had a hand full of carrots...yes carrots. I was vigorously chomping on them to distract myself- It was only when the carrots ran out, that I couldn't hold the tears back any longer. I was forced to focus on what my reality was.
Even in this moment of feeling like I'm back in my powerless, hopeless, empty shell, I know I still have a trick up my sleeve. I have been doing a lot of research on diet and holistic ways of fighting cancer. I have started a new diet and herbal regimen that yours truly put together:) I am continuing to research unconventional, and holistic methods. I have no idea what the out come will be, but I know that the path that I'm paving is exactly where I want to go...and I will fill my shell little by little along the way:)
and now a poem about those empty shells....
Those of us with empty shells
seem to feel deep hopelessness
Yet among the depths...
we realize the shell itself is deep
An empty depth, but we see an outline
emerge...
Only a once full shell could have
created the vast empty interior
Inside is molded by what used to be...
Which suggest there is still a mold to be filled
Take the empty interior, the outline,the mold
and use it to shape the filling...
The material of the filling my be unknown
but the shape is now visible
...a direction made
...a depth filled
With what? I'm not sure
But the deep has become more shallow...
leaving less hopelessness
Going from a shell to that which is reminiscent
of a human being
It may not be a happy ending, but
rather a true, unfolding new beginning...
I have to say at one time I was an empty shell. Just moving through one day in order to go back to bed for the night. It is hard to break the cycle, but I did do it...eventually. Luckily, I had people who love me to point things out for me. I wasn't joking and smiling like I normally love to do. I noticed that I lost interest in dancing and working out- some of my very favorite activities, that would relieve stress and make me feel better. I eventually realized I had no social life, no outlet to let the pain release.
The root of an empty shell is devastation. I struggle with how to describe devastation... there are NO words to describe the feeling of devastation. It is only understood when experienced. Which... isn't that the catch with learning all great emotion? Devastation and tragedy can be tools to helping... no not helping, but rather FORCING the soul to grow. Usually people experience at least one great tragedy in their lifetime. But what about those of us who ALWAYS seem to be in a storm of tragedy? I have learned an immense amount about life over the years of battling cancer- but when does it end? How much devastation and tragedy can one take and still continue to learn from it. I have had nothing but bad news lately- and my past experiences are what help me cope with these current ones. So what am I learning now? I am not trying to be a "debbie downer" but at this moment I can't see the "lesson." There could very well be one, but I sure can't see or understand it with the way I feel...which is devastated and empty.
On Friday, I found out that my right hip joint-that has been hurting me and causing me to limp- has a tumor. This of course did not surprise me because usually where I have pain a tumor then pops up. Radiation is what usually helps my pain, but this time the doctors were hesitant to do that because of all the treatment I've had that has affected my bone marrow already. I've been radiated in my hips before and it caused a certain amount of fibrosis or scar tissue in my marrow. This causes me to have low blood counts that will be permanent. I felt like I had zero options. But I guess they(being the docs.) had a conference and decided they could do radiation but with a different technique. This technique involves giving me lower doses or less treatments to hopefully save my bone marrow but does not have as good affect on killing tumor...or something like that. I also have a risk of my hip breaking because A) the tumor is eating away at it and B) the radiation can make bones more brittle. If this break were to occur, I would need a hip replacement. Yeah...a 20 year old with a hip replacement ...I can see it now...NOT. Even if my hip were replaced it still brings about the problem of the bone marrow- because last time I checked, fake bones do not make marrow. The doctors can transfuse platelets and red blood cells which gives me a boost for about a week. Actually, Wednesday I spent 8hrs... not 2... not 3 but 8hrs being transfused- so you can see why I might not want that so often. But even worse than that, is they can not transfuse white blood cells so if my body were to stop making them- an infection of some kind would be inevitable...and I would have no defense against it.
Needless to say, I did not receive the slightest bit of good news the last couple of days...and trust me I was looking for it. My brain is fried, and most of all devastated. I'm doing a whole lot of staring into space. As I was having this crappy, horrible conversation with my doctors, I luckily had a hand full of carrots...yes carrots. I was vigorously chomping on them to distract myself- It was only when the carrots ran out, that I couldn't hold the tears back any longer. I was forced to focus on what my reality was.
Even in this moment of feeling like I'm back in my powerless, hopeless, empty shell, I know I still have a trick up my sleeve. I have been doing a lot of research on diet and holistic ways of fighting cancer. I have started a new diet and herbal regimen that yours truly put together:) I am continuing to research unconventional, and holistic methods. I have no idea what the out come will be, but I know that the path that I'm paving is exactly where I want to go...and I will fill my shell little by little along the way:)
and now a poem about those empty shells....
Those of us with empty shells
seem to feel deep hopelessness
Yet among the depths...
we realize the shell itself is deep
An empty depth, but we see an outline
emerge...
Only a once full shell could have
created the vast empty interior
Inside is molded by what used to be...
Which suggest there is still a mold to be filled
Take the empty interior, the outline,the mold
and use it to shape the filling...
The material of the filling my be unknown
but the shape is now visible
...a direction made
...a depth filled
With what? I'm not sure
But the deep has become more shallow...
leaving less hopelessness
Going from a shell to that which is reminiscent
of a human being
It may not be a happy ending, but
rather a true, unfolding new beginning...
Saturday, May 7, 2011
PAIN
I'm feeling something that I have felt one thousand times before... Pain. The pain that no one else feels but me. A lonely pain. The cold, icy realization of tumor pain. I always know... I know before anyone else. It is an unmistakable pain. Every time it starts I tell myself "Just wait a few days, maybe you bumped it on something." But even saying that is a double edged sword because when I have that thought, I know I'm looking for a reason or excuse for the pain to be anything else then what I know it really is.
I know my body so well, and I have never been wrong when it comes to my pain. It seems it's one of those situations where you desperately wish you could be wrong. It is the only time I wish I was oblivious. But deep down I have that nagging knowing...The knowing that no one else is aware of. Because I haven't said it yet. When I tell someone, it suddenly makes it real. The longer I keep the pain to myself, the longer it is no one else's to bare. Every tumor is a burden... and I have many burdens. The more I keep this secret pain to myself, the less my family will feel it- at least temporarily.
When my life seems to be at a good constant- meaning I am not on radiation or treatment for a current painful tumor- I have a sense of brief peace. But when my break is over, it is the most heartbreaking, dreadful feeling to have that pain again. The very unmistakably specific pain. The pain of a cancerous tumor chewing away at my bones. I know, eventually I will have to tell my family and doctors( once again!!), but sometimes, I don't always feel sharing is caring... Meaning ,I hate to see the look on my moms face, my friends faces, my brother and sisters faces when I tell them of my new pain. Not only does it make it more real for me, but the sadness I see in so many faces gets overwhelming when you know you are the reason for their pain and sorrow. The second that I tell the first person- the pain spreads across my family aka my support system- much like the cancer in my body spreading from place to place, but instead from person to person.
I think it is only natural that i want to control it somewhere in the chain of events that unfold each time I have THAT pain. Which is why I usually decide to keep it to myself for the first couple days, in order to somehow slow the metastatic pain/sadness cycle. Although, sometimes I wonder whether or not, it gets numbing to others hearing about it, because it is not like this is "new" or anything. I have taken notice to the fact that people will react the way I do. For example, if I tell someone about my new pain and I am crying my eyes out- they tend to not take it so well either. But if I tell them in a "nonchalant",or "as a matter of fact" kind of way they tend to react accordingly. So this is why I try to be very unemotional with certain people when I talk about my new pain- it seems to make others feel better and /or take it better for some reason.
I struggle with wondering if it is even news anymore when a new pain pops up. I mean... I guess thats the idea of a progressive, malignant cancer. Hinted by the words "progressive" and "malignant." It continues to happen. With each tumor- one after the other- it was more and more devastating, crushing a little bit more of my hope each time. But it was as if I had reached a climax, and now because I've had more tumors than I can count- it is as simple as " Yep, that spots gonna have to be radiated." It gets to a point where you are no longer treating the cancer in terms of "This too shall pass" but rather learning to live with a disease that is not going to pass. It goes from "treating" the cancer to "managing" it. Honestly, I wouldn't have a problem managing my cancer- if it was actually somewhat manageable. I guess the bottom line is- even though I feel this way with little energy and all my reserves gone- I AM managing this disease and surviving it one day at a time.
I know my body so well, and I have never been wrong when it comes to my pain. It seems it's one of those situations where you desperately wish you could be wrong. It is the only time I wish I was oblivious. But deep down I have that nagging knowing...The knowing that no one else is aware of. Because I haven't said it yet. When I tell someone, it suddenly makes it real. The longer I keep the pain to myself, the longer it is no one else's to bare. Every tumor is a burden... and I have many burdens. The more I keep this secret pain to myself, the less my family will feel it- at least temporarily.
When my life seems to be at a good constant- meaning I am not on radiation or treatment for a current painful tumor- I have a sense of brief peace. But when my break is over, it is the most heartbreaking, dreadful feeling to have that pain again. The very unmistakably specific pain. The pain of a cancerous tumor chewing away at my bones. I know, eventually I will have to tell my family and doctors( once again!!), but sometimes, I don't always feel sharing is caring... Meaning ,I hate to see the look on my moms face, my friends faces, my brother and sisters faces when I tell them of my new pain. Not only does it make it more real for me, but the sadness I see in so many faces gets overwhelming when you know you are the reason for their pain and sorrow. The second that I tell the first person- the pain spreads across my family aka my support system- much like the cancer in my body spreading from place to place, but instead from person to person.
I think it is only natural that i want to control it somewhere in the chain of events that unfold each time I have THAT pain. Which is why I usually decide to keep it to myself for the first couple days, in order to somehow slow the metastatic pain/sadness cycle. Although, sometimes I wonder whether or not, it gets numbing to others hearing about it, because it is not like this is "new" or anything. I have taken notice to the fact that people will react the way I do. For example, if I tell someone about my new pain and I am crying my eyes out- they tend to not take it so well either. But if I tell them in a "nonchalant",or "as a matter of fact" kind of way they tend to react accordingly. So this is why I try to be very unemotional with certain people when I talk about my new pain- it seems to make others feel better and /or take it better for some reason.
I struggle with wondering if it is even news anymore when a new pain pops up. I mean... I guess thats the idea of a progressive, malignant cancer. Hinted by the words "progressive" and "malignant." It continues to happen. With each tumor- one after the other- it was more and more devastating, crushing a little bit more of my hope each time. But it was as if I had reached a climax, and now because I've had more tumors than I can count- it is as simple as " Yep, that spots gonna have to be radiated." It gets to a point where you are no longer treating the cancer in terms of "This too shall pass" but rather learning to live with a disease that is not going to pass. It goes from "treating" the cancer to "managing" it. Honestly, I wouldn't have a problem managing my cancer- if it was actually somewhat manageable. I guess the bottom line is- even though I feel this way with little energy and all my reserves gone- I AM managing this disease and surviving it one day at a time.
Wednesday, April 27, 2011
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:)
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:)
Friday, April 22, 2011
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:)
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:)
Sunday, April 17, 2011
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.
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.
Monday, April 11, 2011
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? :)
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? :)
Sunday, April 3, 2011
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:)
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.
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.
Saturday, March 12, 2011
The beginning
It's hard to put my experiences with cancer into words with order and reason. Because cancer knows neither order nor reason. I had no idea what awaited me when I first heard the words "You have cancer." Actually, the words were more like "Well... we saw something on the x-ray that doesn't look good...but let's not jump to conclusions." What!! What do you mean "Don't jump to conclusions." You said the bad news first doc. And BOOM! You are in a whirlwind of emotions and a completely new, scary way of life- OH...MY....GOD- I have cancer.
When I say cancer is a whole new way of life, I am neither exaggerating nor embellishing. It is like having two full-time jobs. The first job during the day with appointments, radiation, and chemotherapy- and if you are lucky you will make to your second job later at home- that doesn't always happend. However, once you do make it to your second job at home, you are left to cope with your emotions. You think to yourself "What does this mean?", "What will I do with my life?" "How long are these treatments or how long do I have left to live?" It is sooo hard. But I made a decision for myself and said "This will not beat me." Well... it might beat me UP, but it won't break my spirit. Once I made that decision, I wanted to be positive, funny, and take this as the biggest pain in the ass learning experience of my life.
I was first diagnosed when I was just 14 years old. It is an aggresive childhood bone cancer called Ewing's Sarcoma. I know, who the hell ever heard of that? It was my freshman year of high school, as if I didn't have enough problems already. It was kind of brutal being not only a developping, hormonal teenager, but a bald, sick one at that. I missed a lot of school, but the staff seemed to be very accomadating. However, I had friends in my neighborhood where I lived that were not so understanding. A lot of them actually thought I was lying when I told them about my cancer. Ok... yeah I'm lying about some rare bone cancer called Ewing's sarcoma...I mean come on, who does that? Anyways, it's a heartbreaking experience discovering that you did not have the friends you thought, but a necessary one to be able to recognize it in the future, and have a better support team around you.
Now that I am 20, I can see that my "friends" had no idea how to cope. When you are young, you think you are invincible, so for them to except my situation is to except their own mortality. Although all those "friends" were 2-3yrs older than me at the time, my maturity was greater- even before cancer. I did NOT think I was invincible, ironic huh? Now a days, I'm really glad that experience with those people happend, because I really dodged a bullet- almost all of those "friends" got knocked-up or are on drugs. Whew! Thank God for cancer:)
I've had many experiences through cancer over the last 6 1/2yrs that have made me a better individual, and I'm able to understand people with all trageties better too. But believe me, there are times you think "Now what am I supposed to learn from this one!!?" Especially when you are like me with multiple re-occurances, and metastasis ,and have had multiple different protocols/treatment plans AND STILL have cancer. I've had somewhere between 8and 10 different tumors that have all been treated in some way. After the first time I got cancer, I was hopeful, even after the second relapse followed by a stem cell transplant- I was hopeful. It was only when I was almost 2yrs cancer free and in my second semester of college when it came back for the third time in my skull, did my hope waiver. That was the worst day EVER because not only do your chances of survival dwindle when it comes back after transplant, but so does your zest for life. I may never be able to finish college because of this cancer and make something out of myself- or at least that was my thought at the time. Your life can colapse in an instant, but it takes so much time to build it back up. By this point, I had built myself up multiple times already- could I really do this bullshit for a third time?
When most people get diagnosed with cancer they have choices; chemo and surgery or chemo and radiation. They get to pick between a port and a central line. Ok... so maybe all of those choices suck, but I have had everything on that list, including a stem cell transplant and trying out test studies. I have had three or four central lines and one port over the years( a port is under the skin access, while a central line hangs out of the body as access point for chemo) I've had three different reconstructive surgeries; two on my left humerus when the cancer first arrived -I say arrived like it popped in to say"hello" or something.... but the third was on my skull. Yes, my skull. It is considered brain surgery and they took out a huge chunck of the affected part of my skull. I know, I almost crapped my pants when I found out I had to do this. But don't worry they replaced it (part of my skull) with cement- bone cement that is. How comforting... And of course, I've had more chemo and radiation than the entire oncology wing of Children's and Froedert Hospital put together. Ok... maybe thats a little exaggeration, but it is what I feel like. It got to the point that I was jealous of OTHER cancer patients who didn't have to do everthing I did or had shorter treatments, but most of all I was jealous of survivors. Let's just say that when you are jealous of other cancer patients, its time to re-evalute yourself. In all seriousness, of course I love to hear survivor stories and am ecstatic for them because I know how I would feel if I could be cancer free. It would be indescribable...
Even through all of this stuff, it is completely necessary to laugh and be light-hearted with your everyday experiences- even cancer. Quite frankly, I feel like I could be a poster child for cancer. Meaning I could pretty much answer most questions about it, wheather emotional, scientific, philosophical, whatever makes your boat float. Not that I'm perfect or even close to it, but I have learned a lot over the years and finally want to share and connect with people about it. It is amazing how much helping and learning about others can teach yourself a thing or two. I say that because I would not be where and who I am today if I hadn't listened to the people around me- older people, younger people, and kinds of people. Because although, cancer has taught me priceless things about life itself, there are still "normal" people experiences that I could learn from, and that wiser people can help me with. I try to be a well-rounded person who's every waking minute doesn't concern cancer. No, it is not easy, but I still try to have love, and relationships, travel, and educate myself somehow.
Ah... the area of love and relationships is a great yet pretty twisted area in general, but especially when you have cancer. "Oh.. I'm a Leo that loves long walks on the beach...and...OH by the way, I have a life threatning illness that consumes my everyday life. Wanna get some dinner?" It's not exactly the greatest pick up line. This definitely complicates things, but let me tell you from experience, it's not impossible. It's more like you have a built in "weeder outer"- meaning it weeds out the bad guys pretty quick(or girls). Someone who loves you is not going to care if your bald with a central line sticking out of your chest- even during intimacy- they are just happy to be there:) And it's ok to give yourself time to find YOURSELF beautiful first- that is what is most important. It took me some time to get used to being bald, but I knew it was temporary. As treatmeant went on with radiation to my head- unfortunately I found out I was permanantly going to be bald where I was radiated- which was a HUGE area of scalp. That, I admitt was a much harder pill to swallow. But I found myself a very sexy wig- that did not look like a wig- because that was my biggest fear, was getting a fake looking wig that when people saw you they go " well thats definitely a wig!". It did wonders for my confidence- the wig that is- especially when random people commented on how beautiful I looked and had no idea it was a wig. The bottom line is, if you believe you are beautiful, that will exude and show to others. Whatever the insecurity, it does not matter, you ARE beautiful. And its ok if you need a reminder every now and again.
I've gone through many different stages and phases with cancer, and with life itself. It took me a while to learn that even the bad phases like anger and grief are ok and oh so normal. You can be a happy positive person, but not every waking moment of everyday. You can only except some of the bad a little at a time and cherish and move forward with the good.
Some of the ways I keep persevering has a lot to do with a great support system. My mom, for instance is always there for me, and slept every night in the hospital that i did. Which is a lot of nights... She always tells me to find a little happiness in everyday, to hold us over until we get to those really big happy moments. It's essential to just simply find peace in everyday life. And those reminders help me emmensly, especially when I just got my 4th "Its your last day of Radiation Congradulations Certificate." Really? A radiation tech told me I could make a wallpaper out of all my certificates. Anyways, it's times like that, that you need to laugh it off, and sometimes just having my mom remind me to do just that, can be very inspiring.
Regardless of where your inspiration and strength comes from, take the resources you can. A good friend once told me that it is ok to break down because the people who love you will be there to catch you. Now don't get me wrong, there are people who just say that they want to help you and to give them a call whenever you need, but really they're just saying it to make their own conscious feel better. When it comes to those people who do not follow through just "pick it and flick it!" And when I say "pick it and filck it" I mean like a booger- they don't deserve much more attention than that. But for the people who ARE there for you- cherish them always- they can be pretty few and far between.
Being 20 yrs ,and having as much tragety and racing to grow up as I've had, you learn that friends are where you find them. I have friends that are my age, and friends in their 50s. Sometimes I find I have much more in common with seniors on medicare and SSI than struggling 20 year old college students. And thats ok. In fact, honestly I feel more comfortable surrounding myself with a group of older more knowledgeble people than a typical group of people my age. Which is probably why I only have one friend my age and in college. She is my best friend and has been there for me from the beginning. This is probably one of the reasons we relate so well. Mina has seen me go through it all. She is the one friend who I can go to and say "Can we go now, I have to take my meds by 9:00pm" Most 20 year olds can not comprehend that statement. So take it from me, have fun when you can with whoever you can, no matter age, gender,or nationality. You may find that those who look very different from you on the outside are really quite the same on the inside.
Cancer is a funny thing, it can be the worst thing that ever happens to you, but also one of the most awakening things. It has completely helped to shape and mold who I am today. I see how beautiful and fragile life is ,and try to soak in every moment I can. Alright, maybe not the puking , bone throbbing, back breaking moments. And definitely not the moment where the nurse first comes in the room with a complete biohazard suit on and you realize its to administer the chemo into one of the arteries that goes straight to your heart! Seriously, can they make you feel anymore horrible about putting biohazard waste into your body! But other than that, drink up those happy moments where you laugh at a joke, or cuddle with your kitty or doggy. Enjoy a fresh beer at the end of your day with your family. When I say a fresh beer, I really mean a six pack of course. I look forward to writting a lot more about my experiences with cancer- for this first blog barely hits the tip of the ice burg..
When I say cancer is a whole new way of life, I am neither exaggerating nor embellishing. It is like having two full-time jobs. The first job during the day with appointments, radiation, and chemotherapy- and if you are lucky you will make to your second job later at home- that doesn't always happend. However, once you do make it to your second job at home, you are left to cope with your emotions. You think to yourself "What does this mean?", "What will I do with my life?" "How long are these treatments or how long do I have left to live?" It is sooo hard. But I made a decision for myself and said "This will not beat me." Well... it might beat me UP, but it won't break my spirit. Once I made that decision, I wanted to be positive, funny, and take this as the biggest pain in the ass learning experience of my life.
I was first diagnosed when I was just 14 years old. It is an aggresive childhood bone cancer called Ewing's Sarcoma. I know, who the hell ever heard of that? It was my freshman year of high school, as if I didn't have enough problems already. It was kind of brutal being not only a developping, hormonal teenager, but a bald, sick one at that. I missed a lot of school, but the staff seemed to be very accomadating. However, I had friends in my neighborhood where I lived that were not so understanding. A lot of them actually thought I was lying when I told them about my cancer. Ok... yeah I'm lying about some rare bone cancer called Ewing's sarcoma...I mean come on, who does that? Anyways, it's a heartbreaking experience discovering that you did not have the friends you thought, but a necessary one to be able to recognize it in the future, and have a better support team around you.
Now that I am 20, I can see that my "friends" had no idea how to cope. When you are young, you think you are invincible, so for them to except my situation is to except their own mortality. Although all those "friends" were 2-3yrs older than me at the time, my maturity was greater- even before cancer. I did NOT think I was invincible, ironic huh? Now a days, I'm really glad that experience with those people happend, because I really dodged a bullet- almost all of those "friends" got knocked-up or are on drugs. Whew! Thank God for cancer:)
I've had many experiences through cancer over the last 6 1/2yrs that have made me a better individual, and I'm able to understand people with all trageties better too. But believe me, there are times you think "Now what am I supposed to learn from this one!!?" Especially when you are like me with multiple re-occurances, and metastasis ,and have had multiple different protocols/treatment plans AND STILL have cancer. I've had somewhere between 8and 10 different tumors that have all been treated in some way. After the first time I got cancer, I was hopeful, even after the second relapse followed by a stem cell transplant- I was hopeful. It was only when I was almost 2yrs cancer free and in my second semester of college when it came back for the third time in my skull, did my hope waiver. That was the worst day EVER because not only do your chances of survival dwindle when it comes back after transplant, but so does your zest for life. I may never be able to finish college because of this cancer and make something out of myself- or at least that was my thought at the time. Your life can colapse in an instant, but it takes so much time to build it back up. By this point, I had built myself up multiple times already- could I really do this bullshit for a third time?
When most people get diagnosed with cancer they have choices; chemo and surgery or chemo and radiation. They get to pick between a port and a central line. Ok... so maybe all of those choices suck, but I have had everything on that list, including a stem cell transplant and trying out test studies. I have had three or four central lines and one port over the years( a port is under the skin access, while a central line hangs out of the body as access point for chemo) I've had three different reconstructive surgeries; two on my left humerus when the cancer first arrived -I say arrived like it popped in to say"hello" or something.... but the third was on my skull. Yes, my skull. It is considered brain surgery and they took out a huge chunck of the affected part of my skull. I know, I almost crapped my pants when I found out I had to do this. But don't worry they replaced it (part of my skull) with cement- bone cement that is. How comforting... And of course, I've had more chemo and radiation than the entire oncology wing of Children's and Froedert Hospital put together. Ok... maybe thats a little exaggeration, but it is what I feel like. It got to the point that I was jealous of OTHER cancer patients who didn't have to do everthing I did or had shorter treatments, but most of all I was jealous of survivors. Let's just say that when you are jealous of other cancer patients, its time to re-evalute yourself. In all seriousness, of course I love to hear survivor stories and am ecstatic for them because I know how I would feel if I could be cancer free. It would be indescribable...
Even through all of this stuff, it is completely necessary to laugh and be light-hearted with your everyday experiences- even cancer. Quite frankly, I feel like I could be a poster child for cancer. Meaning I could pretty much answer most questions about it, wheather emotional, scientific, philosophical, whatever makes your boat float. Not that I'm perfect or even close to it, but I have learned a lot over the years and finally want to share and connect with people about it. It is amazing how much helping and learning about others can teach yourself a thing or two. I say that because I would not be where and who I am today if I hadn't listened to the people around me- older people, younger people, and kinds of people. Because although, cancer has taught me priceless things about life itself, there are still "normal" people experiences that I could learn from, and that wiser people can help me with. I try to be a well-rounded person who's every waking minute doesn't concern cancer. No, it is not easy, but I still try to have love, and relationships, travel, and educate myself somehow.
Ah... the area of love and relationships is a great yet pretty twisted area in general, but especially when you have cancer. "Oh.. I'm a Leo that loves long walks on the beach...and...OH by the way, I have a life threatning illness that consumes my everyday life. Wanna get some dinner?" It's not exactly the greatest pick up line. This definitely complicates things, but let me tell you from experience, it's not impossible. It's more like you have a built in "weeder outer"- meaning it weeds out the bad guys pretty quick(or girls). Someone who loves you is not going to care if your bald with a central line sticking out of your chest- even during intimacy- they are just happy to be there:) And it's ok to give yourself time to find YOURSELF beautiful first- that is what is most important. It took me some time to get used to being bald, but I knew it was temporary. As treatmeant went on with radiation to my head- unfortunately I found out I was permanantly going to be bald where I was radiated- which was a HUGE area of scalp. That, I admitt was a much harder pill to swallow. But I found myself a very sexy wig- that did not look like a wig- because that was my biggest fear, was getting a fake looking wig that when people saw you they go " well thats definitely a wig!". It did wonders for my confidence- the wig that is- especially when random people commented on how beautiful I looked and had no idea it was a wig. The bottom line is, if you believe you are beautiful, that will exude and show to others. Whatever the insecurity, it does not matter, you ARE beautiful. And its ok if you need a reminder every now and again.
I've gone through many different stages and phases with cancer, and with life itself. It took me a while to learn that even the bad phases like anger and grief are ok and oh so normal. You can be a happy positive person, but not every waking moment of everyday. You can only except some of the bad a little at a time and cherish and move forward with the good.
Some of the ways I keep persevering has a lot to do with a great support system. My mom, for instance is always there for me, and slept every night in the hospital that i did. Which is a lot of nights... She always tells me to find a little happiness in everyday, to hold us over until we get to those really big happy moments. It's essential to just simply find peace in everyday life. And those reminders help me emmensly, especially when I just got my 4th "Its your last day of Radiation Congradulations Certificate." Really? A radiation tech told me I could make a wallpaper out of all my certificates. Anyways, it's times like that, that you need to laugh it off, and sometimes just having my mom remind me to do just that, can be very inspiring.
Regardless of where your inspiration and strength comes from, take the resources you can. A good friend once told me that it is ok to break down because the people who love you will be there to catch you. Now don't get me wrong, there are people who just say that they want to help you and to give them a call whenever you need, but really they're just saying it to make their own conscious feel better. When it comes to those people who do not follow through just "pick it and flick it!" And when I say "pick it and filck it" I mean like a booger- they don't deserve much more attention than that. But for the people who ARE there for you- cherish them always- they can be pretty few and far between.
Being 20 yrs ,and having as much tragety and racing to grow up as I've had, you learn that friends are where you find them. I have friends that are my age, and friends in their 50s. Sometimes I find I have much more in common with seniors on medicare and SSI than struggling 20 year old college students. And thats ok. In fact, honestly I feel more comfortable surrounding myself with a group of older more knowledgeble people than a typical group of people my age. Which is probably why I only have one friend my age and in college. She is my best friend and has been there for me from the beginning. This is probably one of the reasons we relate so well. Mina has seen me go through it all. She is the one friend who I can go to and say "Can we go now, I have to take my meds by 9:00pm" Most 20 year olds can not comprehend that statement. So take it from me, have fun when you can with whoever you can, no matter age, gender,or nationality. You may find that those who look very different from you on the outside are really quite the same on the inside.
Cancer is a funny thing, it can be the worst thing that ever happens to you, but also one of the most awakening things. It has completely helped to shape and mold who I am today. I see how beautiful and fragile life is ,and try to soak in every moment I can. Alright, maybe not the puking , bone throbbing, back breaking moments. And definitely not the moment where the nurse first comes in the room with a complete biohazard suit on and you realize its to administer the chemo into one of the arteries that goes straight to your heart! Seriously, can they make you feel anymore horrible about putting biohazard waste into your body! But other than that, drink up those happy moments where you laugh at a joke, or cuddle with your kitty or doggy. Enjoy a fresh beer at the end of your day with your family. When I say a fresh beer, I really mean a six pack of course. I look forward to writting a lot more about my experiences with cancer- for this first blog barely hits the tip of the ice burg..
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