"In this corna....The Big C in the multi-colored drug company labeled trunks....weighing in at 98% fatal prognosis! Annnd in this corna... John Doe Chemo in the pasty white trunks....weighing in at 98lbs! Let's have a clean fight!" DING! DING!
Let me ask you this, you might think it's harsh, do you want to live? Your first response might be to roll your eyes and say, "Of course I want to live! Who doesn't?" I want you to stop right there and really think. I mean that old standby of "I saw my life flash before my eyes" needs to come into play here. Really think about the things and people that make your life worth living. Make a list. You are going to need it.
I can not count the number of people who had told me to keep fighting, and that is what this is. Not a silly slap fight with one of the girls, oooh no. This is a Braveheart, heads and limbs flying, blood in the mud, gritting your teeth while swinging a sword against a fierce enemy who is trying desperately to take you down brawl. Trust me, I live with men and have seen this flick 1000 times. I keep wishing at some point they would take a bath in the film but I guess dirty says a whole lot more. Cancer fights dirty. It has no preference for young or old, male or female, or how much pain it renders to the patient or family. What you have to decide is where in the game you fight back and how hard. And when you do I suggest the "Chicago" way. It goes like this: Your enemy pulls out a knife, you pull a gun. Your enemy takes one of yours out, you take out one or better two of his. Get mad. During the time I was sick I more than once I gritted my teeth and said, "GAME OVER!" I think I kind of sounded like Clint but maybe that's just me.
#1: One of the worst things you can do is underestimate the power of your enemy. It is strong, crafty, and deadly. That's why you need to pull in the reinforcements. #2: Have a strong support system of people you can contact for help, prayer, of just to come over and hang out with you. There are going to be times when you are wiped out. Don't think you can do this alone. That will lead you on some crazy train to loner town and who wants to end up there? Taking a look at the sheer number of people standing behind you, your enemy might just turn tail and say, "She or he is not worth it!" #3: You are stronger than you think you are. Don't give up.
"Fight Club" was a brutal movie. Seemingly normal men met to beat each other to a pulp in a secret "club". When asked about the club, you were supposed to respond with, "There is no club." I chose this title because in a way it fits. A lot of people don't even know about the real fight or how hard we are being pummeled on a daily basis. Most of the time we reply with, "What fight?" I guess we are trying to spare our loved ones or maybe trying to seem tougher than we really are. I say we put on the gloves! I say we bounce our way through the crowd pumping our fists in our sweaty satin robes with our mouth protectors! I say we have some crazy guitar solo theme music! WHAT FIGHT?! RIGHT HERE BIG C! BRING IT! OK, at this point, stare into the eye of your enemy, raised your hand slow and deliberate, and motion toward yourself (Bruce Lee move).
What about you? Are you in?
*Stay tuned as next time we give "The Caregivers" some respect they deserve.
Saturday, February 19, 2011
Wednesday, February 16, 2011
Hanging Out With Hope
Isn't that what hope is? Something you haven't seen, felt, or gotten to do yet? I remember how much I didn't feel hopeful when I found out I had cancer. All I could see was the endless march of doctors and medicine and chemo. Maybe I would make it, maybe I wouldn't, I knew plenty of people who didn't. I'm no better or different than anyone else, I only know what happened to me.
Hope started slow and it was other people who helped it along. People came to share their stories of recovery with me, stories of hope. I hung on to these words of encouragement. Some days it was all I could do to get out of bed. I figured if could just make it one more hour, one more day. Hope is a funny thing. It's kind of like a plant. It has to be watered and it needs light. The water and light are things that build you up (encouraging stories, prayers, laughter). It needs to be exposed to the elements so it won't become weak (trials of life). It needs to be pruned (get rid of useless info or discouraging remarks). Eventually it will bloom.
Months moved along slowly. I dreamed of the little white house, of being able to touch and feel the sand on my fingers. Chemotherapy had caused me to have a side-effect called neuropathy. You can't feel your fingers and they feel burned. I hated not feeling because I do a lot of crafts. I had a specialist tell me that this would never go away. She laughed when I said I would work on it. In December of 2010 I was finished with my chemo and told that I was in remission. I had about two months until my husband and I headed to the beach. A lot of my symptoms hadn't gone away and I was discouraged but I still had hope. I prayed like crazy and am pretty sure I used up all of the request time I had with the man upstairs for the next millennium. Ok, I probably hogged up some of your time too.
Hope works like this, it is a jewel you hold in your heart. You cannot see what you are hoping for. If you did, you would not need hope. It is faith that somehow your dream will come about. What a sad and dark place life would be without hope. Do you ever notice how people just fling it haphazardly out at you? "Hope you have a great weekend" or "Hope you fell better soon." Do they?! I don't know! I bet they haven't even given it a thought. It's like a "bless you" when you sneeze. Do you know that when you sneeze your heart stops? It's that second of time between life and death, thus the "bless you." I think we can look at hope as a matter of life or death also. Maybe next time when you visit a sick friend you can point at them and shout, "HOPE to you!" Tell them an encouraging story or hand them a Hallmark card if you are not good with words.
The story ends like this: The little house was perfect. I could hear the waves crashing from my fluffy bed. There were no doctors in sight. As I brushed my fingers back and forth across the sand I cried. I could feel every single pebble.
"Now faith is the assurance of things hoped for, the conviction of things not seen." - Hebrews 11:1
*Stay tuned I have no idea what will come next!
Thursday, February 3, 2011
"Recovery?"
re-cov-ery: a regaining of something lost or stolen; a regaining of balance, control, composure; a return to health, conscience, etc..
I recently was having trouble with one of my medications and had to look up the definition of something called a "Inert Matrix Tablet." I found out that it simply means that they inject medication into a time-released capsule. When swallowed, the stomach acid eats away at the capsule and the medication enters the system at a even time-released pace leaving the unused capsule behind to be discarded by the body. This got me thinking about the movie "The Matrix" and how it related to my current progress. Man, I have a lot of time on my hands. My whole goal here is to be completely honest with you. When I heard that I was moving into a recovery phase of my illness, I had a completely different plan of how it was going to go down. What I thought would happen and what did were two different realities. That's where "The Matrix" comes in.
In the movie people were living in a false, computer generated reality. They were given a choice to take a blue pill and continue living in the false world or take a red pill and confront the truth, a world run by machines (sorry if I missed anything to you Matrix fans out there). In short, "The Matrix" is a computer coded false reality. The "blue pill" for me was the reality I created in my mind. I had visions of making a major comeback with theme to Rocky playing in the back round. There I was running in my sweats through the streets of Granada Hills with people on their front porches waving and cheering me on. My husband and family smiled with tears in their eyes at how strong and amazing their wife, mother, and daughter had become. Then came the "red pill".
You know how sometimes you are forced to do things? Things that are hard or uncomfortable? Things that frankly you would much rather be stabbed to death with a spork than do. Being told I have to get moving sounded so easy when I was laying around on meds watching the Cooking Channel. When dawn cracked in my house and I slowly squeaked one eyelid open, the wave of dread that hit me was like the latest tsunami in Indonesia. I hated everyone and everything, including myself for being such a wimpy whiny..well..sick person!
I cried over toast every morning because it took a half an hour to eat it. Everything tasted and smelled awful and I HAD to eat. Let me just say that when you are forced to eat, it looses it's charm but quick. I was down from 125 to 95 and looked like a stick person. I had to pad chairs because of my bony backside. None of my clothes or underclothes fit me. I could barely shuffle down our back alley which was a real let down to my two little young dogs who need exercise. I found myself apologizing to them and throwing out an extra treat for their time. All of the side-effects I thought would magically disappear are still loitering around like cheap dime store hoodlums. Where is the the theme music!? The raw egg milkshakes!? The waving neighbors!? The arms raised in a big V!!
It started slow. I could eat a little more. I had a craving. I noticed something that made me smile. I re-arranged cupboards with my mom. I took up cooking and even some canning (things I had always wanted to do only never had time). My hands and legs moved a little easier. I could drive down the street by myself. I did some yard work. This was not the fireworks grand finale I was thinking of but ok. I am now two months and a week from my last chemo and five months out from major surgery. I have read that it will probably take from six months to a year for me to really feel more like myself. I am almost half way there. I still get frustrated and discouraged when I have my "bad days." How come I'm so impatient? Is it that I'm an American and want everything now. Is it that I live in Los Angeles where everyone goes at Autobahn speeds? We don't even have an Autobahn! Or is it that I am just human and forced to face my frailty. I hate being weak. I hate crying, even if it is by myself. I hate having to rely on my husband to open jars for me.
I guess the bottom line is this... Sometimes we are weak and can't do it without help. Don't ya hate that? I would like to think I can do it all but I can't. My good friend Mario told me, "I'm gonna tell you right now. You better quit thinking that you can do it all. You are putting too much pressure on yourself." He was a football coach for many years and you know what? I'm not a 6' 18 year old linebacker and he is right. I have to take the red reality pill and take it easy on myself. I need to keep reminding myself that it is ok to take three steps forward and two steps back. At least I gained one more. I guess that's why they call it the recovery "process".
Stay tuned as next time we do some "Hanging Out With Hope"
I recently was having trouble with one of my medications and had to look up the definition of something called a "Inert Matrix Tablet." I found out that it simply means that they inject medication into a time-released capsule. When swallowed, the stomach acid eats away at the capsule and the medication enters the system at a even time-released pace leaving the unused capsule behind to be discarded by the body. This got me thinking about the movie "The Matrix" and how it related to my current progress. Man, I have a lot of time on my hands. My whole goal here is to be completely honest with you. When I heard that I was moving into a recovery phase of my illness, I had a completely different plan of how it was going to go down. What I thought would happen and what did were two different realities. That's where "The Matrix" comes in.
In the movie people were living in a false, computer generated reality. They were given a choice to take a blue pill and continue living in the false world or take a red pill and confront the truth, a world run by machines (sorry if I missed anything to you Matrix fans out there). In short, "The Matrix" is a computer coded false reality. The "blue pill" for me was the reality I created in my mind. I had visions of making a major comeback with theme to Rocky playing in the back round. There I was running in my sweats through the streets of Granada Hills with people on their front porches waving and cheering me on. My husband and family smiled with tears in their eyes at how strong and amazing their wife, mother, and daughter had become. Then came the "red pill".
You know how sometimes you are forced to do things? Things that are hard or uncomfortable? Things that frankly you would much rather be stabbed to death with a spork than do. Being told I have to get moving sounded so easy when I was laying around on meds watching the Cooking Channel. When dawn cracked in my house and I slowly squeaked one eyelid open, the wave of dread that hit me was like the latest tsunami in Indonesia. I hated everyone and everything, including myself for being such a wimpy whiny..well..sick person!
I cried over toast every morning because it took a half an hour to eat it. Everything tasted and smelled awful and I HAD to eat. Let me just say that when you are forced to eat, it looses it's charm but quick. I was down from 125 to 95 and looked like a stick person. I had to pad chairs because of my bony backside. None of my clothes or underclothes fit me. I could barely shuffle down our back alley which was a real let down to my two little young dogs who need exercise. I found myself apologizing to them and throwing out an extra treat for their time. All of the side-effects I thought would magically disappear are still loitering around like cheap dime store hoodlums. Where is the the theme music!? The raw egg milkshakes!? The waving neighbors!? The arms raised in a big V!!
It started slow. I could eat a little more. I had a craving. I noticed something that made me smile. I re-arranged cupboards with my mom. I took up cooking and even some canning (things I had always wanted to do only never had time). My hands and legs moved a little easier. I could drive down the street by myself. I did some yard work. This was not the fireworks grand finale I was thinking of but ok. I am now two months and a week from my last chemo and five months out from major surgery. I have read that it will probably take from six months to a year for me to really feel more like myself. I am almost half way there. I still get frustrated and discouraged when I have my "bad days." How come I'm so impatient? Is it that I'm an American and want everything now. Is it that I live in Los Angeles where everyone goes at Autobahn speeds? We don't even have an Autobahn! Or is it that I am just human and forced to face my frailty. I hate being weak. I hate crying, even if it is by myself. I hate having to rely on my husband to open jars for me.
I guess the bottom line is this... Sometimes we are weak and can't do it without help. Don't ya hate that? I would like to think I can do it all but I can't. My good friend Mario told me, "I'm gonna tell you right now. You better quit thinking that you can do it all. You are putting too much pressure on yourself." He was a football coach for many years and you know what? I'm not a 6' 18 year old linebacker and he is right. I have to take the red reality pill and take it easy on myself. I need to keep reminding myself that it is ok to take three steps forward and two steps back. At least I gained one more. I guess that's why they call it the recovery "process".
Stay tuned as next time we do some "Hanging Out With Hope"
Tuesday, February 1, 2011
A Word On Faith
It has been said that there are "no atheists in foxholes." I heard a story one time of a guy who went to Vietnam and met another guy who claimed to be an atheist. He saw the same guy a couple of weeks later and he had a necklace on with every conceivable religious symbol known to man. There was a cross, an ankh, a Jewish star, and some kind of claw plus others. He asked him, "What do you believe? I can't tell by your necklace." The guy replied with wide eyes, "Man, in my position, I can't afford to piss anyone off."
I think that having a life threatening illness is a definite foxhole and maybe a little like Vietnam warfare. There you are, in a dense jungle of doubt with some unseen enemy lurking behind every shadow waiting to take you out. There are no clear answers and you don't even know why you're there. It becomes all about survival. At this point you find out that it is safer in numbers. The question is you and who? Now I'm not here to tell you what to believe and that isn't my job, despite what many well-meaning religious folks might think. The fact is that religion itself rarely gets anyone anywhere. You can be religious about anything. It is where you go when you get into trouble. You can be religious about your pocketbook, Starbucks, Facebook, astrology, "green" living and the list goes on. If you take drugs you can be a religious dope smoker and I know plenty. Do you race for your medicine cabinet any time you think you "might" get a headache? I have done that a couple of times.
It happened like this. I was a dumb teenager. I had too much too drink and decided it would be a good idea to run my 74' Honda Civic (the size of a shoe) down a very steep hill and "end it all." I rammed this little car through a block wall, a two car garage, and totaled two full-size Cadillac luxury vehicles. Nothing happened to me. I ended up in court with a public defender who told me, "This judge is tough, you are going down and there is nothing I can do for you." It was at this point I made a fateful bargain with the unknown. I was standing there before the judge and said to myself, "Ok whoever you are up there, if you are real, get me out of this and I promise to make a real effort to find out who you are." The judge looked at me and said, "I don't have any paper work on you, case dismissed!" The defender and I stood there with our mouths open. On the way back to his office he said, "I have never seen that happen." I was thinking about the bargain I just made and figured I was in big trouble. For the next few months I had to take a bus and walk two blocks alone to where I worked at the Mission Hills Cemetery. I found out not too long ago that my walking route was between three major gang territories. You need to know that I am a shrimpy white girl with blonde hair and more than likely stuck out like a sore thumb. Somebody was watching out for me.
I did make an effort to find out who and what I believed in. I have studied every "ism" out there. I have hung out and listened to New Age stuff and gazed into crystals. I have checked out witchcraft and the Satanic bible written by Howard Stanton Levey, a former carnival worker. When I got into trouble I tried to run to these things and was met with mainly silence. I found that most of these mentioned have an ever-dangling carrot you have to chase to receive anything back. Some of them have "secret knowledge" you have to attain. Just tell me now! I have the same thought for people who tell me, "If you send a certain amount, we will send you this miracle information or bible study." How about telling me right now! Since when do you have the corner on bible info? My final conclusion? There is a God, and I am gratefully not him. How do I know? Because I met him.
If you are still reading it means you haven't clicked me off yet. Here it is. I did not hear a Charlton Heston like voice booming over me. It happened in more practical ways. I always thought religious people were nerdy, hair-sprayed, polyester wearing jerks and I wanted no part in that. To this day TBN gets on my nerves. I asked some simple questions in my own way and figured if he made me he could take it. Besides, I didn't know any religious lingo to throw out. Here's an example, "If you aren't some dumb slogan on a bumper sticker then show me." How about this one, "If I go to heaven I do not want to be with any of these people!" My mom called me to tell me about a bumper sticker she saw that read, "Dear Jesus, save me from your followers." I like that one.
So how about you? Where do you go when you are in a foxhole with the enemy advancing? I'll tell you this from experience, it better be something a little more daunting than a shiny rock or some incense. Human beings were built for relationship. We weren't made to maverick it even though we would like to. I am an avid western fan. The other day I was watching "Pale Rider" a famous Clint Eastwood movie. The main character (Eastwood) never mentions his name. We are left at the end to ponder. Is he a ghost? A reincarnated sheriff bent on revenge perhaps? Laying in the hospital with tubes and monitors sticking out of you in all directions like a 50's home-made television set is not the time to ponder. Real, and I mean real fear sets in lightning fast my friend and you need some real answers.
To make a long story short I got my answers. Take a chance, ask a few questions yourself. Request that the answers be given that only the unique you can understand, in your language. This is not Vegas and you've got absolutely nothing to loose. I'm still the same shrimpy white girl I was, only with less hair and a little better for the wear and the lessons that I have learned. I have lived through a deadly illness and didn't have to go it alone.
Edmond: "I don't believe in God."
Abbe Faria: "It doesn't matter. He believes in you."
-from The Count of Monte Cristo
Stay tuned as next time we will take on "Recovery?"
I think that having a life threatening illness is a definite foxhole and maybe a little like Vietnam warfare. There you are, in a dense jungle of doubt with some unseen enemy lurking behind every shadow waiting to take you out. There are no clear answers and you don't even know why you're there. It becomes all about survival. At this point you find out that it is safer in numbers. The question is you and who? Now I'm not here to tell you what to believe and that isn't my job, despite what many well-meaning religious folks might think. The fact is that religion itself rarely gets anyone anywhere. You can be religious about anything. It is where you go when you get into trouble. You can be religious about your pocketbook, Starbucks, Facebook, astrology, "green" living and the list goes on. If you take drugs you can be a religious dope smoker and I know plenty. Do you race for your medicine cabinet any time you think you "might" get a headache? I have done that a couple of times.
It happened like this. I was a dumb teenager. I had too much too drink and decided it would be a good idea to run my 74' Honda Civic (the size of a shoe) down a very steep hill and "end it all." I rammed this little car through a block wall, a two car garage, and totaled two full-size Cadillac luxury vehicles. Nothing happened to me. I ended up in court with a public defender who told me, "This judge is tough, you are going down and there is nothing I can do for you." It was at this point I made a fateful bargain with the unknown. I was standing there before the judge and said to myself, "Ok whoever you are up there, if you are real, get me out of this and I promise to make a real effort to find out who you are." The judge looked at me and said, "I don't have any paper work on you, case dismissed!" The defender and I stood there with our mouths open. On the way back to his office he said, "I have never seen that happen." I was thinking about the bargain I just made and figured I was in big trouble. For the next few months I had to take a bus and walk two blocks alone to where I worked at the Mission Hills Cemetery. I found out not too long ago that my walking route was between three major gang territories. You need to know that I am a shrimpy white girl with blonde hair and more than likely stuck out like a sore thumb. Somebody was watching out for me.
I did make an effort to find out who and what I believed in. I have studied every "ism" out there. I have hung out and listened to New Age stuff and gazed into crystals. I have checked out witchcraft and the Satanic bible written by Howard Stanton Levey, a former carnival worker. When I got into trouble I tried to run to these things and was met with mainly silence. I found that most of these mentioned have an ever-dangling carrot you have to chase to receive anything back. Some of them have "secret knowledge" you have to attain. Just tell me now! I have the same thought for people who tell me, "If you send a certain amount, we will send you this miracle information or bible study." How about telling me right now! Since when do you have the corner on bible info? My final conclusion? There is a God, and I am gratefully not him. How do I know? Because I met him.
If you are still reading it means you haven't clicked me off yet. Here it is. I did not hear a Charlton Heston like voice booming over me. It happened in more practical ways. I always thought religious people were nerdy, hair-sprayed, polyester wearing jerks and I wanted no part in that. To this day TBN gets on my nerves. I asked some simple questions in my own way and figured if he made me he could take it. Besides, I didn't know any religious lingo to throw out. Here's an example, "If you aren't some dumb slogan on a bumper sticker then show me." How about this one, "If I go to heaven I do not want to be with any of these people!" My mom called me to tell me about a bumper sticker she saw that read, "Dear Jesus, save me from your followers." I like that one.
So how about you? Where do you go when you are in a foxhole with the enemy advancing? I'll tell you this from experience, it better be something a little more daunting than a shiny rock or some incense. Human beings were built for relationship. We weren't made to maverick it even though we would like to. I am an avid western fan. The other day I was watching "Pale Rider" a famous Clint Eastwood movie. The main character (Eastwood) never mentions his name. We are left at the end to ponder. Is he a ghost? A reincarnated sheriff bent on revenge perhaps? Laying in the hospital with tubes and monitors sticking out of you in all directions like a 50's home-made television set is not the time to ponder. Real, and I mean real fear sets in lightning fast my friend and you need some real answers.
To make a long story short I got my answers. Take a chance, ask a few questions yourself. Request that the answers be given that only the unique you can understand, in your language. This is not Vegas and you've got absolutely nothing to loose. I'm still the same shrimpy white girl I was, only with less hair and a little better for the wear and the lessons that I have learned. I have lived through a deadly illness and didn't have to go it alone.
Edmond: "I don't believe in God."
Abbe Faria: "It doesn't matter. He believes in you."
-from The Count of Monte Cristo
Stay tuned as next time we will take on "Recovery?"
Sunday, January 30, 2011
I'm Sick Of Being Sick!
Ok, so I realized I might have lost it a little when in the process of recovering from major abdominal surgery, cancer, and chemo-induced menopause at 45, I recently got a body rash from using a different laundry detergent and screamed at the plastic container, "Is that all you've got!"
Let's cut to the chase. We all hate being sick, ill, out of sorts. There are endless commercials that promise to ease our ills with medications that have side-effects that are worse the what they claim to cure. My husband and I laughed at one the other night that proclaimed, "if you have experienced death from using an acne treatment you could call the 800 number on the screen", WHAT!
I must admit I figured that when the doc mentioned the golden ticket called remission that everything that I had experienced would magically disappear, not so! My GP explained it like this, "Listen Shurie, let's pretend you are a marathon runner. What do marathon runners do at the end of the race while everyone is jumping up and down and cheering for them? THEY COLLAPSE. That is what your body is doing. Give it time to rest and recover. You have just run the race of your life."
So I ask you, what is your race? I have been extremely sick for about 7 months. For some it's more, some less. I just heard about one women who is still staying in the hospital for a rare blood condition and visiting her family when she can after 6 years! I don't know about you but I don't think I could pull that off. I'm no hero. I didn't like even having a little cold before this. I have had a lot of people tell me that they think I am brave but I don't feel brave. I feel tired and sometimes discouraged at my lack of progress. Sure, I'm glad to be alive. Sure, I've come a long way. I still have a long way to go. I am now just able to walk my little dogs around the school by my house. I used to run around it two to three times. Man, my legs and backside sure hurt. I look at my awesome vintage beach cruiser with longing. I have dreams of running with the wind whipping through the hair I don't have. I get grumpy at commercials (I watch a lot of t.v. lately) of people romping around and having what seems like the time of their lives while I'm sitting at home working a cross stitch in my slippers. I am tired of bland food. I went crazy and visited the new local cup cake store which I'm sure by the way they have on every corner in Heaven. Did I sample? You bet I did brother! Did I pay for it? You bet I did, in many ways but well worth it!
Thank you for letting me vent. So what do we do with all this. We sure don't listen to bad advice. Here's an example, "Look on the bright side, you could have (insert ridiculous remark here)." Here is another gem, "At least you have (insert unhelpful adage here)." We sure don't surf the web for our condition and hang on to the worse story available, positive that that we be our demise. Don't believe statistics or medical reports that promise doom. Believe me, we all get hit with this stuff. Resist the temptation and throw out the junk. Keep the good. No, this is not easy for me to say. I'm right there with ya. Sometimes I get really down. Sometimes I just cry. Sometimes I get angry and yell at God. Go ahead, he can take it. You know what though, when I am proactive I feel better. I search for "constructive" info or advice on the web or in books. I listen to encouraging advice and stories from people who have been there and are doing better now. I listen to inspirational music. I journal and write down my experiences. I pray and still hold out hope that every day I get a little closer to being completely well again. I set little goals for myself every day that keep me going and give me a reason to get up.
So hang in there, keep fighting by putting one foot in front of the other. You will have your good days and bad ones too. I know I do. Most of all remember you are not alone even though you may feel like it at times.
Stay tuned for the next post, "A Word On Faith"
Let's cut to the chase. We all hate being sick, ill, out of sorts. There are endless commercials that promise to ease our ills with medications that have side-effects that are worse the what they claim to cure. My husband and I laughed at one the other night that proclaimed, "if you have experienced death from using an acne treatment you could call the 800 number on the screen", WHAT!
I must admit I figured that when the doc mentioned the golden ticket called remission that everything that I had experienced would magically disappear, not so! My GP explained it like this, "Listen Shurie, let's pretend you are a marathon runner. What do marathon runners do at the end of the race while everyone is jumping up and down and cheering for them? THEY COLLAPSE. That is what your body is doing. Give it time to rest and recover. You have just run the race of your life."
So I ask you, what is your race? I have been extremely sick for about 7 months. For some it's more, some less. I just heard about one women who is still staying in the hospital for a rare blood condition and visiting her family when she can after 6 years! I don't know about you but I don't think I could pull that off. I'm no hero. I didn't like even having a little cold before this. I have had a lot of people tell me that they think I am brave but I don't feel brave. I feel tired and sometimes discouraged at my lack of progress. Sure, I'm glad to be alive. Sure, I've come a long way. I still have a long way to go. I am now just able to walk my little dogs around the school by my house. I used to run around it two to three times. Man, my legs and backside sure hurt. I look at my awesome vintage beach cruiser with longing. I have dreams of running with the wind whipping through the hair I don't have. I get grumpy at commercials (I watch a lot of t.v. lately) of people romping around and having what seems like the time of their lives while I'm sitting at home working a cross stitch in my slippers. I am tired of bland food. I went crazy and visited the new local cup cake store which I'm sure by the way they have on every corner in Heaven. Did I sample? You bet I did brother! Did I pay for it? You bet I did, in many ways but well worth it!
Thank you for letting me vent. So what do we do with all this. We sure don't listen to bad advice. Here's an example, "Look on the bright side, you could have (insert ridiculous remark here)." Here is another gem, "At least you have (insert unhelpful adage here)." We sure don't surf the web for our condition and hang on to the worse story available, positive that that we be our demise. Don't believe statistics or medical reports that promise doom. Believe me, we all get hit with this stuff. Resist the temptation and throw out the junk. Keep the good. No, this is not easy for me to say. I'm right there with ya. Sometimes I get really down. Sometimes I just cry. Sometimes I get angry and yell at God. Go ahead, he can take it. You know what though, when I am proactive I feel better. I search for "constructive" info or advice on the web or in books. I listen to encouraging advice and stories from people who have been there and are doing better now. I listen to inspirational music. I journal and write down my experiences. I pray and still hold out hope that every day I get a little closer to being completely well again. I set little goals for myself every day that keep me going and give me a reason to get up.
So hang in there, keep fighting by putting one foot in front of the other. You will have your good days and bad ones too. I know I do. Most of all remember you are not alone even though you may feel like it at times.
Stay tuned for the next post, "A Word On Faith"
Wednesday, January 26, 2011
"Yes, I Have Cancer." Connecting With Other People
The conversation went something like this:
"How have you been doing?"
"Not so hot, I have been diagnosed with cancer."
She looks at my lack of hair under my hat, "I can see that. Well take care of yourself and good luck with that." Not exactly the cup half-full kind of pep talk. When my husband and I got in the car we laughed.
People handle the illness of others in many different directions. All over the map you might say. Some don't even seem to be from the same planet. I have been told by my closest friends, you know the ones, those you have sat and listened to for hours pouring out their hearts to you in their crisis situations, that they didn't want to call and "bother" me. I have had seemingly mere acquaintances call me every single day just to "check in." Then there are the true gems. These are the people who just call and say, "I am making mac and cheese and would you like me to bring it over?" They come and hug and go. Their are those who send get well cards and those who send email and some who leave you messages on Facebook (a great source for mass communication by the way). Some people just don't have a clue what to say so they don't say anything. I have a hard time with the last one. How hard is it to smile at somebody and say, "I have been thinking of you?" And I am just talking about the people you know here.
I have noticed that in public I can sometimes feel someone staring at me and turn around to find a knowing smile. I wonder if they have gone through what I have? I have also had people avoid me. I don't think it's me personally, maybe it is the reality of their own mortality hitting them. We are all susceptible to illness, maybe some just don't want to "go there". What about survivor complex? I have often felt bad around somebody who I know has lost a loved one to cancer. I guess I feel bad for living through it when others haven't.
In the beginning it was difficult for me to juggle everything. I was dealing with recovery from surgery and the effects of chemo every two weeks much less trying to deal with what other people felt. Then when I started going out into the public I began to felt self-conscious. I just knew that everyone knew I had cancer. The reality is that most people were busy and hardly noticed. When they did they were usually polite and I was the one to bring it up. Due in part to the latest cancer fighting campaigns and television commercials, I think more people have empathy and are supportive. I have had more than a few tell me to keep up the fight. It seems like everywhere you go there is somebody who has been affected by this disease.
The best advice I can probably give you is to be honest with yourself and with others. Being honest with yourself means that you are aware of the fact that there are just some things you cannot do right now. And by the way, you do look different. Know your limits. Turn down offers of visits and activities that you just aren't up to. Allow people to help you if you need it. Being honest with others is being open about your condition. Allow people to ask questions. I had one woman come up to me and ask me if I was sick. Instead of becoming defensive, I smiled and said, "Yes, but I am better than before." She just wanted to offer to pray for me. A young girl who worked with my daughter wanted to ask me some questions but was too afraid to ask. Her father had cancer and wasn't doing too well. My daughter told me and I made it a point to tell her about my experience. Be honest with your loved ones. If you feel crummy say so. Don't think you have to be a superhero. We have bad days and we can't carry the load on our own. We were designed to share with others.
In a recent article I read, "You will waste your cancer if you let it drive you into solitude instead of deepening your relationships. Our culture is terrified of facing death. It is obsessed with medicine. It idolizes youth, health, and energy. It tries to hide any signs of weakness or imperfection. You will bring huge blessing to others by living openly, belivingly, and lovingly within your weaknesses. Paradoxically, moving out into relationships when you are hurting and weak will actually strengthen others. Your need gives others an opportunity to love." I myself tend to withdraw when I have a problem but have found the above statements to be true. My marriage, family relationships, and some friendships have grown stronger within the midst of my illness.
I encourage you to reach out and connect with other people. Read about other's experiences so you don't feel alone and contribute to the conversation. There are many support groups and online resources for you. Ask around or research on your computer. Above all don't withdraw and isolate yourself. It is ok to want time alone but reaching out will contribute greatly toward your healing. And you have a lot to offer!
Stay tuned as next time we will talk about, "I'm Sick Of Being Sick!"
"How have you been doing?"
"Not so hot, I have been diagnosed with cancer."
She looks at my lack of hair under my hat, "I can see that. Well take care of yourself and good luck with that." Not exactly the cup half-full kind of pep talk. When my husband and I got in the car we laughed.
People handle the illness of others in many different directions. All over the map you might say. Some don't even seem to be from the same planet. I have been told by my closest friends, you know the ones, those you have sat and listened to for hours pouring out their hearts to you in their crisis situations, that they didn't want to call and "bother" me. I have had seemingly mere acquaintances call me every single day just to "check in." Then there are the true gems. These are the people who just call and say, "I am making mac and cheese and would you like me to bring it over?" They come and hug and go. Their are those who send get well cards and those who send email and some who leave you messages on Facebook (a great source for mass communication by the way). Some people just don't have a clue what to say so they don't say anything. I have a hard time with the last one. How hard is it to smile at somebody and say, "I have been thinking of you?" And I am just talking about the people you know here.
I have noticed that in public I can sometimes feel someone staring at me and turn around to find a knowing smile. I wonder if they have gone through what I have? I have also had people avoid me. I don't think it's me personally, maybe it is the reality of their own mortality hitting them. We are all susceptible to illness, maybe some just don't want to "go there". What about survivor complex? I have often felt bad around somebody who I know has lost a loved one to cancer. I guess I feel bad for living through it when others haven't.
In the beginning it was difficult for me to juggle everything. I was dealing with recovery from surgery and the effects of chemo every two weeks much less trying to deal with what other people felt. Then when I started going out into the public I began to felt self-conscious. I just knew that everyone knew I had cancer. The reality is that most people were busy and hardly noticed. When they did they were usually polite and I was the one to bring it up. Due in part to the latest cancer fighting campaigns and television commercials, I think more people have empathy and are supportive. I have had more than a few tell me to keep up the fight. It seems like everywhere you go there is somebody who has been affected by this disease.
The best advice I can probably give you is to be honest with yourself and with others. Being honest with yourself means that you are aware of the fact that there are just some things you cannot do right now. And by the way, you do look different. Know your limits. Turn down offers of visits and activities that you just aren't up to. Allow people to help you if you need it. Being honest with others is being open about your condition. Allow people to ask questions. I had one woman come up to me and ask me if I was sick. Instead of becoming defensive, I smiled and said, "Yes, but I am better than before." She just wanted to offer to pray for me. A young girl who worked with my daughter wanted to ask me some questions but was too afraid to ask. Her father had cancer and wasn't doing too well. My daughter told me and I made it a point to tell her about my experience. Be honest with your loved ones. If you feel crummy say so. Don't think you have to be a superhero. We have bad days and we can't carry the load on our own. We were designed to share with others.
In a recent article I read, "You will waste your cancer if you let it drive you into solitude instead of deepening your relationships. Our culture is terrified of facing death. It is obsessed with medicine. It idolizes youth, health, and energy. It tries to hide any signs of weakness or imperfection. You will bring huge blessing to others by living openly, belivingly, and lovingly within your weaknesses. Paradoxically, moving out into relationships when you are hurting and weak will actually strengthen others. Your need gives others an opportunity to love." I myself tend to withdraw when I have a problem but have found the above statements to be true. My marriage, family relationships, and some friendships have grown stronger within the midst of my illness.
I encourage you to reach out and connect with other people. Read about other's experiences so you don't feel alone and contribute to the conversation. There are many support groups and online resources for you. Ask around or research on your computer. Above all don't withdraw and isolate yourself. It is ok to want time alone but reaching out will contribute greatly toward your healing. And you have a lot to offer!
Stay tuned as next time we will talk about, "I'm Sick Of Being Sick!"
Saturday, January 22, 2011
What's The Deal With Side-Effects!?
First off let's come to the conclusion that everyone is different. I am not claiming to be an authority or to have extensive medical education. There are different kinds of cancer and different treatments and different side-effects. I only know what I have experienced and what I did to get some relief. I quickly found that I wasn't given adequate info and found myself frustrated and searching for answers in books and on the internet. Thank God for my husband and mom who were my support crew. Sometimes it took all three of us to pray, search for answers, argue with nurses, interrogate pharmacists, and scour the net. I was told by my doctor that they "hope for the best" in every situation which was supposed to be an answer to "why didn't somebody tell me this was going to happen to me?!"
This is by no means the whole list of side-effects but I would strongly encourage you not to go to lists (they are very long) because they will only scare you and you will end up looking for things to happen to you. Try to only look up side-effects that you are currently experiencing and their treatments. A good resource is www.chemocare.com but there are certainly others and forums you can join for questions, info, and support. I belong to www.cancerforums.net which is free to join and has people with your specific diagnosis that you can talk to. I found that these side-effects were mostly chemo-related and eventually faded after treatment. Now let's get crackin' and name some names!
-Nausea: This is a big one for a lot of people but I didn't have a lot of it and was able to keep an appetite and eat. When you have chemo they will give you medication for this and also a prescription to take home for appetite and nausea. The nausea med Zofran didn't help me much but the appetite med Megestrol did.
-Heartburn: This was a big one for me. The antacid the doctor prescribed was a must. I made sure to not eat after 8:00 because it aggravated the symptoms.
-Acid Reflux: Also helped by antacids. If you have throat pain, gargling with warm salt water helps.
-Headache: I only used extra strength Tylenol and got by ok. *This was mostly a symptom of steriods which they gave me for inflammation.
-Chapped Lips: Use a washcloth and warm water and rub the excess skin gently. Apply vitamin E. Chapstick was not enough.
-Dry Skin: Get yourself some really good moisturizer especially for your face. Now is not the time to go cheap. Chemo dries out everything.
-Constipation: Drink tons of water. Ask your doc for advice if this is persistent.
-Hemorrhoids: Go with the above symptom. My doc prescribed Proctofoam which worked wonders.
-Neuropathy: A damage to the nerves. You will feel a tingling/numbness/slight burning in your hands and feet. Tell your doc immediately if you experience this! They can tweak your meds to alleviate it (I found out too late). I am still working on recovery of this but it is coming back slowly.
-Fatigue: You will be tired but move as much as possible. It helps to take short little walks and do regular chores. Laundry helped me to feel like I had a normal routine. Ask for help if you need it and rest if you need to. Remind yourself that you can say no to activities or visits from people.
-Body Aches: My bones ached. Hot baths with Epson salt and lavender helped out a lot. You can buy bags of it at most drug stores. They also helped me to relax and sleep at night.
-Chemo Head: Sometimes I would zone out and get confused. I had to give myself time and be patient and write things down or have my family do so.
-Hair Loss: Happened gradually for me. I collected hats, scarves, and wigs. Wigs can be expensive but they have some really cool ones now. Your doc can write a prescription for one and your insurance might pick up the tab or some stores give discounts for chemo patients. Check around.
*Medications have their own set of delightful side-effects:
-Steroids: They are given to you during chemo to help with side-effects. They can cause side-effects of their own including sleeplessness so research this one. I had to start slowly and stop slowly with them.
-Pain Medication: I was given major meds in the hospital and sent home with none. This caused MAJOR problems for me. Make sure to take the least amount possible and that you step down from them by taking less and less until you stop.
If you have any questions about any of these please feel free to comment. I would like to add that a good multi vitamin and B vitamins have helped me a lot. You can also ask for a B12 shot if you think you need it. I was really tired and found out I needed blood transfusions because my cell numbers were low. Remember to tell your nurses and doctor everything that is going on with you even if you think it is nothing. Hang in there, ask, and research. You can do this!
Stay tuned as next time we tackle "Yes, I have Cancer" Connecting With Other People.
This is by no means the whole list of side-effects but I would strongly encourage you not to go to lists (they are very long) because they will only scare you and you will end up looking for things to happen to you. Try to only look up side-effects that you are currently experiencing and their treatments. A good resource is www.chemocare.com but there are certainly others and forums you can join for questions, info, and support. I belong to www.cancerforums.net which is free to join and has people with your specific diagnosis that you can talk to. I found that these side-effects were mostly chemo-related and eventually faded after treatment. Now let's get crackin' and name some names!
-Nausea: This is a big one for a lot of people but I didn't have a lot of it and was able to keep an appetite and eat. When you have chemo they will give you medication for this and also a prescription to take home for appetite and nausea. The nausea med Zofran didn't help me much but the appetite med Megestrol did.
-Heartburn: This was a big one for me. The antacid the doctor prescribed was a must. I made sure to not eat after 8:00 because it aggravated the symptoms.
-Acid Reflux: Also helped by antacids. If you have throat pain, gargling with warm salt water helps.
-Headache: I only used extra strength Tylenol and got by ok. *This was mostly a symptom of steriods which they gave me for inflammation.
-Chapped Lips: Use a washcloth and warm water and rub the excess skin gently. Apply vitamin E. Chapstick was not enough.
-Dry Skin: Get yourself some really good moisturizer especially for your face. Now is not the time to go cheap. Chemo dries out everything.
-Constipation: Drink tons of water. Ask your doc for advice if this is persistent.
-Hemorrhoids: Go with the above symptom. My doc prescribed Proctofoam which worked wonders.
-Neuropathy: A damage to the nerves. You will feel a tingling/numbness/slight burning in your hands and feet. Tell your doc immediately if you experience this! They can tweak your meds to alleviate it (I found out too late). I am still working on recovery of this but it is coming back slowly.
-Fatigue: You will be tired but move as much as possible. It helps to take short little walks and do regular chores. Laundry helped me to feel like I had a normal routine. Ask for help if you need it and rest if you need to. Remind yourself that you can say no to activities or visits from people.
-Body Aches: My bones ached. Hot baths with Epson salt and lavender helped out a lot. You can buy bags of it at most drug stores. They also helped me to relax and sleep at night.
-Chemo Head: Sometimes I would zone out and get confused. I had to give myself time and be patient and write things down or have my family do so.
-Hair Loss: Happened gradually for me. I collected hats, scarves, and wigs. Wigs can be expensive but they have some really cool ones now. Your doc can write a prescription for one and your insurance might pick up the tab or some stores give discounts for chemo patients. Check around.
*Medications have their own set of delightful side-effects:
-Steroids: They are given to you during chemo to help with side-effects. They can cause side-effects of their own including sleeplessness so research this one. I had to start slowly and stop slowly with them.
-Pain Medication: I was given major meds in the hospital and sent home with none. This caused MAJOR problems for me. Make sure to take the least amount possible and that you step down from them by taking less and less until you stop.
If you have any questions about any of these please feel free to comment. I would like to add that a good multi vitamin and B vitamins have helped me a lot. You can also ask for a B12 shot if you think you need it. I was really tired and found out I needed blood transfusions because my cell numbers were low. Remember to tell your nurses and doctor everything that is going on with you even if you think it is nothing. Hang in there, ask, and research. You can do this!
Stay tuned as next time we tackle "Yes, I have Cancer" Connecting With Other People.
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