For those of us who remember, there used to be a Wendy's commercial in which an old lady would look into a hamburger and yell, "Where's the beef!?" I'm not sure but I think that since I have been getting well again after a year since my lymphoma diagnosis began I have officially found the beef. You know, when you walk away from a remission report things tend to look pretty darn rosy. Suddenly, the sky is blue, the flowers are in bloom, the birds are singing and your whole outlook is a sense of amazement that can only come from a brush with death. You are a survivor! You should be wearing a t-shirt with a huge S on the front man! Then as time goes by life shows up once again. There's the morning alarm, the drive to anywhere (especially those of us who live in Los Angeles), the noisy neighbor, the cell phones, the long lines. Wait, where the heck did the sky go?! There in which my friends, lies the beef. A general jaded trudge through life's mud puddles with holey wellies.
I didn't set out to find it but I somehow did. I think it sometimes starts with waking up feeling like poop on a stick and ends with me yelling, "Come on!" to some hapless teen driver-in-training who can't possibly hear me. Maybe it's just me but I hate grocery shopping. Oh I like lists, it's just the actual going to the store pushing around my hand-wipe washed cart around the aisles. The putting away is a drag also. Hmm...how long has this been in there? What the heck is it?! I've never even seen that! Well, we'll push it to the back and put some new stuff in. I could go on.
This week I have a follow up with my oncologist. She will rub down my neck and underarms again to see if I have any lymph bumps. She will ask me how I am doing and tell me I have to have another scan. I have to say, I don't like these visits. It makes me uncomfortable but I am thankful for them. For the cancer patient in remission there is always that looming fear of the unknown.
This visit puts life into perspective. Suddenly that beef went somewhere else. It all seems very small somehow. The alarm is almost welcome, the neighbor isn't so noisy, at least I have people who bother to call me and the kid is just learning how to drive. I figure if I can just walk out of that office with an ok pass for another three months I'm golden.
I don't know. Maybe it's just me and I don't even know if anyone reads this stuff. I think we all need our reminders of how precious and fragile life can be. Right now I have one child serving on a Navy ship in Japan. I have another in Holland teaching. Every time I think about it, I am amazed and thankful that they are having opportunities that I have never had. I had my first at nineteen and have been a mother most all my life and at 45 with finally an empty nest was diagnosed with a Anaplastic T-Cell Non-Hodgekin's Lymphoma. A really long name for a nasty little illness. I am now just learning what it is to have time to do thing's without children. I have my whole life on the horizon and it looks pretty good from here. Hey? Did you just hear that little song bird? I think he was singing the song "Blue Skies."
Monday, July 11, 2011
Friday, June 17, 2011
There's No Place Like Hope
I have been to two funerals in two weeks. A long time family friend passed away after a long fight with a bad stroke. My family and I attended, tried to console her anguished husband and only son who were left behind. Two weeks later we got the call from her son that his father had been found dead from a self-inflicted gun shot. We made the trek in shock to yet another funeral. Same place, same people.
The prevailing feeling that I got was "no hope". Suicide can be summed up in those two words I think. It took me back to ten months ago. I was in the hospital and just diagnosed with Lymphoma. A great heaviness enveloped me like a dark cloud. Have you ever felt that way? I know I have. I have even thought the unthinkable. I was making my bed when I came home from the hospital. I was really sick. I happened to remember I have a weapon in my house and my mind started going "there." Family and friend's faces floated past my mind. Who would find me? I finally decided that I didn't want to leave them with that mess. And that is what it is, one big mess. You see, suicide is not an answer at all. On the contrary, it is a big question mark. Throw in a big dose of guilt and you get the picture. The survivors are left with no closure, all the time wondering if they could have done more. I watched my friend's face at the funeral. He looked haggard and worn and full of the grief of not losing one but both parents. It was gut wrenching.
So what of hope? I believe it is there if we look, even in the small things. After I was determined to live I started to see it. Hey, I just smiled or laughed at a joke. Hey, I was just able to take one more bite of food or shuffle my monkey slippers a few more steps. Wow, look at that bird outside the window. You know, I just love the taste of coffee ice cream. I enjoy the laughter of my children across the dinner table. My little dog sure is soft and follows me around to lie right next to where I hurt. How do they know? And many, many more.
You know something? Miracles do happen and doctors don't know everything. I am a miracle. I never had to have a bone marrow transplant! 98% of people with Lymphoma do. I am cancer free within a year! I love my short hair so much I keep cutting it! I could list all of the doomsday predictions for my life but why? They were wrong about me and they are wrong about you. No one on this great planet knows how long you will live or how you will respond to treatment. You need to choose life and fight like hell. Prove them wrong and revel in the proverbial jaw drop. Or, "I am amazed at your recovery." A good friend of mine has been diagnosed with Pancreatic Cancer and was given gloomy reports. They told her they would probably be unable to operate and that she probably would not make it. Well she did have her surgery and she is making it with flying colors. She came through chemo with hardly any side-effects.
I can say one thing for sure, our Maker identifies with pain. I believe also that he does not condemn those who find themselves so hopeless and grief-stricken that they can see no way out but a self-inflicted death sentence. I think he would say, "You know, I had so much more for you. We could have gotten through it together. I was listening." I also think that that way out is a selfish thing. It says, "There is no hope." It leaves way too many people in pain.
I am here to click my red Converse high tops and say there is hope. There is someone listening. There are people who care and....there's no place like hope.
Love, Shurie
Love, Shurie
Monday, May 16, 2011
The High Cost Of Dependency
Forget about gas! Have you taken a look at the price of prescriptions of late? Pray you never have a life-threatening illness which requires (trust me on this) various scraps of little white scribbled paper. God help you if you don't have the right insurance to cover "some" of it. When I was diagnosed with cancer, I had no clue what was in store. Before long I was on a first name basis with local pharmacists. I switched from one to another because some just could not get it right no matter what info they were given. This struggle adds just one more burden to the patient and their hapless family.
A couple of my readers just might notice that I haven't written in a while. The truth is that I am not here to complain about the high cost of medication but rather the outcome of their use and my personal recovery. I am being as honest as I possibly can be in hopes that I might be able to help one person. This might even be your story. I can only speak for myself and wanted to make sure that I waited so that I went through the recovery process and can speak about it with confidence.
In the hospital I was given A LOT of medication. They kept pushing me to take more. I don't blame them for this because I just got out of major surgery and had Lymphoma. What I do blame them for and the medical establishment as a whole is their general lack of advice and knowledge of what the body goes through when those medications are stopped "cold turkey" to coin a phrase. Upon leaving the hospital I was told to go home and "rest" after days of taking hard core Percocet. I went through a withdrawal hell like you cannot fathom. I finally went to my oncologist who prescribed for me a little medication called Methadone. After seeing my wide-eyed response ( after all I wasn't a heroine addict) she told me that it was an even-release pain medication and that I would have no problem since it was such a low dose. Six months later and it is time for me to stop taking pain medication. She was wrong.
I had weaned myself from 10mg to 2.5mg. I was wondering why I felt like a 90 year old woman. The nightmares were full length Steven King epic adventures. I decided to cut the 2.5 all together. Bad Deal. I ended up in a crying heap in my living room with depression and fatigue and a whole host of other glorious side-effects. My husband came home and took one look and told me that we needed to start at square one with the 2.5 and cut down even slower. Who knew that this little pill packed such a wallop! I had become addicted to opiates.
I don't know if you have noticed lately but prescription dependency is on the rise. It is the new high for high school students and young adults. Addiction in America to Vicodin, Oxycodone, and other opiates is out of control. How do I know? Because I have seen and heard the statistics. The truth is that most addicts are just trying to avoid withdrawal by continuing to use. What makes it tougher is that those with real pain issues need these medications to cope. I don't know what the alternative is. I wish there was one. Doctors just seem to pass out the paper and off you go. The fact is that they have never been through withdrawal, I have. I think that if they have been through the experience then they might think about some alternatives. I'm sure the billion dollar prescription drug industry has NOTHING to do with the current status quo.
So what happened to yours truly? Well I was sent by my General Practitioner to a pain management doctor who gave me a choice. Did I want to go on another lesser opiate like Vicodin and wean off? Heck no! I told him that I just wanted to get clean of this crap. He laughed and put me on a blood pressure medication patch that is also used for ADHD children and is a non-narcotic called Clonidine 1mg. I told my husband that due to my ADD, if there was anything he needed to get my attention for, the next couple of weeks is go time! So far it is helping take off the edge and I am 13 days free of Methadone. I also researched like a mad woman and found out that it is the number ONE addictive drug to hit the U.S. It is a synthetic form of heroine and has a longer half-life (stays longer in the body) than the real deal. It is one little monster to get rid of. I also have been attending NA meetings to get info and support. Why? Because dependency is dependency and I need help and accountability from other people going through similar circumstances. I have gotten more helpful info from them than the doctors. The drug treatment center laughed in my face. Apparently they only help people with 100mg a day problems. Don't you think it is sad that we have as a country gotten to that stage? We only acknowledge the "BIG" stuff and not the little guy or girl struggling to do the right thing?
My sincere advice is that if you find yourself in my position GET HELP. Do not try to do it on your own. Get a support system and fight for your life back without the help of substances. Research before you just take anything on a piece of paper. I found out that a lot of the people in meetings started out with legit reasons to take medication. I know I had one but in the end the cost was pretty high. My prayers are with you and if you have any questions, please comment.
For Now, One Day At A Time
Monday, April 4, 2011
The Ai Button
My husband recently purchased me a much needed new fangled digital camera. I had hassled one too many times with the old one and finally whined enough to warrant a trip to the electronics store. I stood staring at the long table of cameras with various gadgets with the glazed-over look of a non-techie and was immediately lost. The sales guy eventually swaggered over and gave me a tour. I finally settled on one simple camera with automatic everything (and no, I did not need the hyper-zoom so that I can capture half a football field away sounds like a stalker device option). One particular feature that caught my attention was the Ai button. What is this you ask and what does it have to do with illness and recovery? Let me tell you what it does.
That main trouble I was having with the old camera, besides the fact that it ate batteries like the plant in Little Shop of Horrors, is that I couldn't get the focus right. I have to take a lot of close-up shots for ebay and other things that I sell. I kept getting blurry pics no matter how I tried to adjust the dang thing. This is a problem. You can't sell merchandise with blurry photos and look serious. I had to keep pushing DELETE! It drove me crazy and took up time, thus the new purchase. The little gem called the Ai button is located on top of the camera next to the shudder button so that when you push it, it kicks into "Auto Intelligence" and can automatically recognize faces, objects, landscape, etc. It adjusts the lense by itself and presto, perfect picture for me! The best is the close-up option. It recognizes close objects and takes crystal clear pictures.
This Ai button thing got me thinking about myself. I had been out of focus. I was dwelling on things of no long-term importance. Life became dull and mundane. Even my relationship with God was slipping. I began to ask myself what it was all for. I had recently became an empty-nester with two grown children. I was a parent most of my life starting very young at nineteen years old. What now? Then the Ai button got pushed. I was diagnosed with a life-threatening illness. We all dread the Big C don't we? It's all around us. It threatens us from across the ocean in a big radiation cloud or lurks in bottled water plastic. Most of us know someone who has had it or have had it ourselves. I can tell you that I have asked the man upstairs that if I get the chance, I would like the first crack at it on Judgement Day. Let me at it! How dare you steal my health, friends, and loved ones?! WHACK!
You know what? When that button got pushed things came into focus for me. What and who was really important became crystal clear. I automatically recognized faces, objects, landscape. Colors were brighter. Flowers smelled sweeter. Family and friends became precious again. My far away relationship with God got the close-up view that it deserved and became clear again. I don't ask what now anymore. I am enjoying life as it comes one day after the next. To sum it all up....one digital camera about a hundred bucks. The Ai button.....priceless!
That main trouble I was having with the old camera, besides the fact that it ate batteries like the plant in Little Shop of Horrors, is that I couldn't get the focus right. I have to take a lot of close-up shots for ebay and other things that I sell. I kept getting blurry pics no matter how I tried to adjust the dang thing. This is a problem. You can't sell merchandise with blurry photos and look serious. I had to keep pushing DELETE! It drove me crazy and took up time, thus the new purchase. The little gem called the Ai button is located on top of the camera next to the shudder button so that when you push it, it kicks into "Auto Intelligence" and can automatically recognize faces, objects, landscape, etc. It adjusts the lense by itself and presto, perfect picture for me! The best is the close-up option. It recognizes close objects and takes crystal clear pictures.
This Ai button thing got me thinking about myself. I had been out of focus. I was dwelling on things of no long-term importance. Life became dull and mundane. Even my relationship with God was slipping. I began to ask myself what it was all for. I had recently became an empty-nester with two grown children. I was a parent most of my life starting very young at nineteen years old. What now? Then the Ai button got pushed. I was diagnosed with a life-threatening illness. We all dread the Big C don't we? It's all around us. It threatens us from across the ocean in a big radiation cloud or lurks in bottled water plastic. Most of us know someone who has had it or have had it ourselves. I can tell you that I have asked the man upstairs that if I get the chance, I would like the first crack at it on Judgement Day. Let me at it! How dare you steal my health, friends, and loved ones?! WHACK!
You know what? When that button got pushed things came into focus for me. What and who was really important became crystal clear. I automatically recognized faces, objects, landscape. Colors were brighter. Flowers smelled sweeter. Family and friends became precious again. My far away relationship with God got the close-up view that it deserved and became clear again. I don't ask what now anymore. I am enjoying life as it comes one day after the next. To sum it all up....one digital camera about a hundred bucks. The Ai button.....priceless!
Tuesday, March 22, 2011
The Wait Is Pretty Heavy
I don't know about you but if "Good things come to those who wait" I am about to get a big lump of coal. I hate to wait. I live in a society that is formed in lines. If you live in the city like I do the only difference from the country is that there is a hundred people waiting ahead of me not five. I go to where my mom lives in the mountains just to go to the DMV (my son calls them the "Gait Keepers" of humanity) because of the miserable lines that stretch out of the building and into the street in my area. And no, I will not tell you where she lives because I do not want to wait behind you! I call it a good day when I breeze through the errands I need to do fairly easily. That means without the lady with the 50 coupons in front of me who can't see without her glasses and is paying in pennies.That means that there is no guy with the bumping stereo racing between cars and flipping me the bird. What can I say? Maybe it is the culture of "get it quick" that I grew up in. Heck, they could solve life-long problems on the Love Boat in a freakin hour! Let's talk about how this all adds up when it comes to a long-term illness shall we?
When I was told I had lymphoma I had already been sick for at least a couple of months. It suddenly felt like this endless road had stretched out in front of me with no sunset. How long? and how much? were the beginning of most questions in my mind. I felt doomed. Besides waiting, I hate needles. Why mankind has not found a better way to introduce medication I will never know. We put a hunk of metal into space people! Anyway, I was about to get a whole lot of both in one package. What does one like me do in this situation? Two things, curse and cry of course. Did you think I was much more spiritual? Not by a long shot. I didn't have thanking God for the experience first on my list. It was more like "HELP!" I am afraid and don't think I can do this!
When I look back on it, my illness was short compared to most. It was May of last year that the symptoms really kicked in. It is less than a year and I am in remission and feeling more like myself every day. How did I do it? I clung like a baby monkey to my faith. I tried my best to focus on what I needed to do for that day or minute. I tried to follow to the best of my ability my doctor's orders. I asked for help when I needed it. I pushed myself harder than I have ever done for anything. I wanted to live. I tried to keep my humor. Did I do all of this to perfection? NO! But I got up and prayed and tried again the next day.
If you think about it we all hate to wait. I see you in my rear view mirror two inches from my bumper! When it comes to life's circumstances sometimes we have no choice. This past month I have been through my mom's knee replacement surgery. She is a trooper. This time I got to be on the other end and help her out. Did I learn anything? You bet. Thank you Lord, it sure feels good to be on the other end.
When I was told I had lymphoma I had already been sick for at least a couple of months. It suddenly felt like this endless road had stretched out in front of me with no sunset. How long? and how much? were the beginning of most questions in my mind. I felt doomed. Besides waiting, I hate needles. Why mankind has not found a better way to introduce medication I will never know. We put a hunk of metal into space people! Anyway, I was about to get a whole lot of both in one package. What does one like me do in this situation? Two things, curse and cry of course. Did you think I was much more spiritual? Not by a long shot. I didn't have thanking God for the experience first on my list. It was more like "HELP!" I am afraid and don't think I can do this!
When I look back on it, my illness was short compared to most. It was May of last year that the symptoms really kicked in. It is less than a year and I am in remission and feeling more like myself every day. How did I do it? I clung like a baby monkey to my faith. I tried my best to focus on what I needed to do for that day or minute. I tried to follow to the best of my ability my doctor's orders. I asked for help when I needed it. I pushed myself harder than I have ever done for anything. I wanted to live. I tried to keep my humor. Did I do all of this to perfection? NO! But I got up and prayed and tried again the next day.
If you think about it we all hate to wait. I see you in my rear view mirror two inches from my bumper! When it comes to life's circumstances sometimes we have no choice. This past month I have been through my mom's knee replacement surgery. She is a trooper. This time I got to be on the other end and help her out. Did I learn anything? You bet. Thank you Lord, it sure feels good to be on the other end.
Tuesday, March 1, 2011
"Take A Number...... Please!"
I can be one tough and stubborn broad, just ask my husband. Wanna know how to get me to do anything? Just tell me it can't be done. I will walk all the way to Hawaii to prove to you that it can be done. Take statistics...no really, please take them. Just don't quote to me the numbers for survival of a life-threatening disease, or how my kids are going to not make it if I am a single mom, or divorce rates of people married more than once or the percentage of anything at all. What does it all mean? Absolutely squat! And do you know why? Because I am a human being and not a number or a statistic and neither are you.
Do me and yourself a big favor today and put down or click off any medical or other information that quotes to you how many of anything live or succeed or move on to greater things. This information is of no value to you whatsoever. I like what one of my all time favorite people said, "I do not file things into my brain that I find useless or of little value. I will then have plenty of room for the pertinent and things I find of value to me."
-Sherlock Holmes
Why am I going on this tirade? Because I hate how statistics make people feel. How do you feel when you read them? You are fighting the fight of your life and here comes the latest 98% of people like you_____( fill in the blank). Do you feel discouraged, heavy, depressed? All for what? We as humans can barely get the weather right! Do we think some scientist in white lab gear has a better take? Are these "professionals" the same people who can't seem to give my good friend the right diagnosis after several tries while she sits home and waits to see if she has cancer? Why leave my fate to a bunch of numbers? Next week they will have a new take on how Captain Crunch cereal is to blame for some mad biological epidemic outbreak. Not me babe.
I want you to know that you are not a statistic. I want you to know that you are an individual, unique, made in the image of God. I want you to know that you are not a number but a person, worthy of great awe, fearfully and wonderfully made. Every person has their own DNA and way that their body works and responds to disease and treatment. How many times have you heard about somebody who was given days or weeks or months to live only to still be living after the time given them. Why would a doctor even guess? What kind of news is that? He really has NO idea.
I would like to encourage you with my story. I was a single mom and my kids made it. I went through a divorce and now am married to a wonderful man. I had a life-threatening aggressive type of cancer and am living. I am not a statistic. I am a 46 year old woman and have a name, a family, a life worth fighting for, a future. Don't quote me your numbers. I find them useless and of little value and need room for more important things like the great Holmes. If you do, you will be talking to my backside as I take a little stroll to the Hawaiian islands.
Wednesday, February 23, 2011
Blessed Are The Caregivers
"I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me." -Jesus Matthew 25:26
I recently read a quote by Ben Stein, "I am not much but I am all I think about." Then I remembered the people who have cared for me through this illness. My husband who stayed with me night after night in the hospital and lifted me out of bed when I needed it only to get up in the morning and go back to work. My mother who crocheted a wardrobe of amazing hats, sat with me day after day watching the Food Networks and drove me to hassle with doctors and pharmacists. My daughter who washed my face and cut my hair tenderly with great smelling products. My son who dutifully watched the clock for my medicine and brought me ice chips. I had friends who visited (and some who didn't), friends who called and sent cards and food. People who prayed that didn't even know me.
The truth is that care-giving is not limited to even one of these things. It is act of giving care even from afar. I have had people tell me, "I just didn't call because I didn't know what to say" or "I knew some one who recently died and just couldn't deal with you being sick" or "I just can't handle hospitals." You know what I say to that? GET OVER YOURSELF! This is about the sick person and not you. You know what I would have rather heard, "I am having a really hard time with this but I am calling to say I am thinking about you." If you have a hard time talking, then send a card. If you have a hard time with hospitals, then call the room. You know, who the heck likes hospitals anyway?! Why do people say this? Who goes there on a joy ride? "Hey, I got nothing to do, let's go check out the hospital!" My mom is having knee surgery next week. Am I looking forward to it? No, but you just try and keep me out.
People say that I inspire them but you know who inspires me? The friend who I hardly knew who called me EVERY day just to say hi and check in. Some days I couldn't answer the phone and just laid there and smiled at the answering machine. The friend who brought over home-made mac n cheese in a crazy wig so I didn't feel so bad. The friend who commented on every single Facebook update to encourage me. People across the states and close to home who prayed faithfully for me (some who never met me) and introduced themselves later with a smile. The older couple who checked in and came to be with me when I needed them. My boss who kept my job for me and keeps my position flexible.
Don't you know that you can be one of these inspirations? I want to follow their example. I have a good friend right now who is fighting pancreatic cancer. I am doing my best to be there and be a comforting presence for her. The caregivers are the true heroes. They push themselves aside and get to work. They push their sleeves up and get in there. They take a chance at being uncomfortable, messy, tired, upset, and generally having to deal with someone who quite frankly is not them self and may be unpleasant as well. I know that pretty much described me. I was too busy fighting to survive and couldn't always give a high five. I cried and complained. Sometimes I was a real pain in the butt.
I thank God for my caregivers and the fact that they hung in there with me all the way. I only hope that someday people will say about me, that I was one of the ones who really cared. How about you?
I recently read a quote by Ben Stein, "I am not much but I am all I think about." Then I remembered the people who have cared for me through this illness. My husband who stayed with me night after night in the hospital and lifted me out of bed when I needed it only to get up in the morning and go back to work. My mother who crocheted a wardrobe of amazing hats, sat with me day after day watching the Food Networks and drove me to hassle with doctors and pharmacists. My daughter who washed my face and cut my hair tenderly with great smelling products. My son who dutifully watched the clock for my medicine and brought me ice chips. I had friends who visited (and some who didn't), friends who called and sent cards and food. People who prayed that didn't even know me.
The truth is that care-giving is not limited to even one of these things. It is act of giving care even from afar. I have had people tell me, "I just didn't call because I didn't know what to say" or "I knew some one who recently died and just couldn't deal with you being sick" or "I just can't handle hospitals." You know what I say to that? GET OVER YOURSELF! This is about the sick person and not you. You know what I would have rather heard, "I am having a really hard time with this but I am calling to say I am thinking about you." If you have a hard time talking, then send a card. If you have a hard time with hospitals, then call the room. You know, who the heck likes hospitals anyway?! Why do people say this? Who goes there on a joy ride? "Hey, I got nothing to do, let's go check out the hospital!" My mom is having knee surgery next week. Am I looking forward to it? No, but you just try and keep me out.
People say that I inspire them but you know who inspires me? The friend who I hardly knew who called me EVERY day just to say hi and check in. Some days I couldn't answer the phone and just laid there and smiled at the answering machine. The friend who brought over home-made mac n cheese in a crazy wig so I didn't feel so bad. The friend who commented on every single Facebook update to encourage me. People across the states and close to home who prayed faithfully for me (some who never met me) and introduced themselves later with a smile. The older couple who checked in and came to be with me when I needed them. My boss who kept my job for me and keeps my position flexible.
Don't you know that you can be one of these inspirations? I want to follow their example. I have a good friend right now who is fighting pancreatic cancer. I am doing my best to be there and be a comforting presence for her. The caregivers are the true heroes. They push themselves aside and get to work. They push their sleeves up and get in there. They take a chance at being uncomfortable, messy, tired, upset, and generally having to deal with someone who quite frankly is not them self and may be unpleasant as well. I know that pretty much described me. I was too busy fighting to survive and couldn't always give a high five. I cried and complained. Sometimes I was a real pain in the butt.
I thank God for my caregivers and the fact that they hung in there with me all the way. I only hope that someday people will say about me, that I was one of the ones who really cared. How about you?
Saturday, February 19, 2011
Cancer Fight Club!
"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.
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.
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.
Wednesday, January 19, 2011
Hair! Not the Musical
Gimme head with hair
Long beautiful hair
Shining, gleaming,
Streaming, flaxen, waxen
Give me down to there hair
Shoulder length or longer
Here baby, there mama
Everywhere daddy daddy
Hair, hair, hair, hair, hair, hair, hair
Flow it, show it
Long as God can grow it
My hair
- From the musical "Hair"
Let's be honest, we are all concerned with hair and our own in particular. Whether we have it or not, how long it is, does it mysteriously hide one eye, does it identify us with a particular group of people, do we add fake extensions. I must admit after watching "The King and I", I had a major thing for good old Yule Brenner and he didn't have a lick of hair. If we are diagnosed with cancer and are starting chemo it's like a ticking clock goes off somewhere in your mind and you are asking yourself, "When's it going?" I can only tell you what happened to me because everyone is different. I did however get some pretty good advice and I will share it with you.
Odds are good you will loose your hair. Everyone hears a rumor that someone's aunt or friend never did but I did and probably so will you. Plan ahead. If you have long hair like I did, a good idea is to give it a good short cut in the beginning. DO NOT SHAVE IT at first. You will be tempted to do this. The hair thing was on my mind when I had my husband drive me down to the local barber shop to get some good advice from the experts. Luckily one of the guys mom was a cancer survivor so he knew what he was talking about. He told me not to shave it because you will end up with little pointy hairs everywhere when they fall out. Think of it! In your clothes, in your pillow stabbing you, ugh. They told me after I cut it short to let it fall out on it's own, then when I was done with chemo it would start to grow back and we could trim it all one length or shave it and it would grow at the same rate.
You might wonder, "Well what about those comb-over strands? I don't want to look like The Donald!" I know I know, I did too. Here's what you do:
-Collect some really cool scarves. There are some cool web sites for scarf tying. Here is one www.tznius.com.
-Collect some hats that you like (soft ones are best). You can get crochet hats for really cheap on ebay. Remember that hats will fit differently when hair is gone. My mom made me a crochet hair net for under my hats that were bigger when this happened.
-Wear jewelry that makes you feel good on your neck and ears.
Your hair will probably fall out after the second chemo. Some loose theirs after the first. It will mostly fall out in the shower because the shampoo and hot water loosens the follicles. Get a drain cover or you will have plumbing trouble. Get a hair net and wear it at night. You might even want to put a towel over your pillow so it won't go everywhere. I did not loose all of mine at once but gradually and my eyelashes and eyebrows actually GREW until the very end. They fell out when they were replaced by the new ones which made it less traumatic. I just drew the eyebrows in and wore fake eyelashes that looked natural.
Truth be told, you men will have an easier time with this due to the fact that it is fashionable for men to have shorter or even bald heads. Please don't draw in your eyebrows or wear fake lashes. For us chicks it is hard. It's ok and not vain to cry about it. I cried when I lost mine because I felt ugly and that maybe my husband would think so too. The truth is that those that truly love you will be supportive and remember it is not forever. Mine is growing back quickly and I am only one and a half months after my last chemo. It is about 1/8 inches and I had my stylist daughter shave it. It is coming in very soft and new and I am proud to say I sort of look like GI Jane without the muscles which encourages me to get exercising again!
Hang in there and look through some hair magazines with short cuts. The good news is that short is in! Stay tuned for next time when we talk about What's the Deal With Side-Effects?
Long beautiful hair
Shining, gleaming,
Streaming, flaxen, waxen
Give me down to there hair
Shoulder length or longer
Here baby, there mama
Everywhere daddy daddy
Hair, hair, hair, hair, hair, hair, hair
Flow it, show it
Long as God can grow it
My hair
- From the musical "Hair"
Let's be honest, we are all concerned with hair and our own in particular. Whether we have it or not, how long it is, does it mysteriously hide one eye, does it identify us with a particular group of people, do we add fake extensions. I must admit after watching "The King and I", I had a major thing for good old Yule Brenner and he didn't have a lick of hair. If we are diagnosed with cancer and are starting chemo it's like a ticking clock goes off somewhere in your mind and you are asking yourself, "When's it going?" I can only tell you what happened to me because everyone is different. I did however get some pretty good advice and I will share it with you.
Odds are good you will loose your hair. Everyone hears a rumor that someone's aunt or friend never did but I did and probably so will you. Plan ahead. If you have long hair like I did, a good idea is to give it a good short cut in the beginning. DO NOT SHAVE IT at first. You will be tempted to do this. The hair thing was on my mind when I had my husband drive me down to the local barber shop to get some good advice from the experts. Luckily one of the guys mom was a cancer survivor so he knew what he was talking about. He told me not to shave it because you will end up with little pointy hairs everywhere when they fall out. Think of it! In your clothes, in your pillow stabbing you, ugh. They told me after I cut it short to let it fall out on it's own, then when I was done with chemo it would start to grow back and we could trim it all one length or shave it and it would grow at the same rate.
You might wonder, "Well what about those comb-over strands? I don't want to look like The Donald!" I know I know, I did too. Here's what you do:
-Collect some really cool scarves. There are some cool web sites for scarf tying. Here is one www.tznius.com.
-Collect some hats that you like (soft ones are best). You can get crochet hats for really cheap on ebay. Remember that hats will fit differently when hair is gone. My mom made me a crochet hair net for under my hats that were bigger when this happened.
-Wear jewelry that makes you feel good on your neck and ears.
Your hair will probably fall out after the second chemo. Some loose theirs after the first. It will mostly fall out in the shower because the shampoo and hot water loosens the follicles. Get a drain cover or you will have plumbing trouble. Get a hair net and wear it at night. You might even want to put a towel over your pillow so it won't go everywhere. I did not loose all of mine at once but gradually and my eyelashes and eyebrows actually GREW until the very end. They fell out when they were replaced by the new ones which made it less traumatic. I just drew the eyebrows in and wore fake eyelashes that looked natural.
Truth be told, you men will have an easier time with this due to the fact that it is fashionable for men to have shorter or even bald heads. Please don't draw in your eyebrows or wear fake lashes. For us chicks it is hard. It's ok and not vain to cry about it. I cried when I lost mine because I felt ugly and that maybe my husband would think so too. The truth is that those that truly love you will be supportive and remember it is not forever. Mine is growing back quickly and I am only one and a half months after my last chemo. It is about 1/8 inches and I had my stylist daughter shave it. It is coming in very soft and new and I am proud to say I sort of look like GI Jane without the muscles which encourages me to get exercising again!
Hang in there and look through some hair magazines with short cuts. The good news is that short is in! Stay tuned for next time when we talk about What's the Deal With Side-Effects?
Monday, January 17, 2011
Let's Talk Chemo
Chemo is kinda like Al-Qaeda, mysterious, random, hard-hitting, and can strike most anywhere. Chemo's job is to kill cells. The problem is that in the process of killing the bad cells, it takes out the good ones too. You can't prepare for chemo physically but you can plan ahead. Go shopping or do any necessary errands before treatment. Arrange for a loved one or friend to help with meals or cleaning or just to hang with you when you feel crappy. Rent some cool movies.
When I first pictured chemo, it was like one of those commercials for St. Judes playing in my mind. Bald, pale, and gaunt figures floating around with soft piano music in the back round. Not even close. Sure there were a couple of "hair challenged" individuals around but they usually were wearing some kind of cool head wear like myself thanks to my mom who is a crochet master in her own right. I actually heard laughing when we came close to the treatment room.
Here's what will happen:
-A nurse will help you find a chair (we had really cushy lounge types) and get you comfortable. By the way, oncology nurses are in a class by themselves. All of them I met were kind and helpful and this includes the office staff. It takes special people to do what they do on a daily basis. They will ask you a round of questions on how you are doing and any symptoms you are having. Make sure to tell them EVERYTHING even if you think it is insignificant.
-You will probably have your blood drawn, depending on the type of cancer you have to check cell, iron levels, etc. Some people have a traditional IV and others have a port which is a kind of plug in the chest to put the IV in.
-An IV bag will be brought over and hooked up for your first round of medication. I had three different bags including an orange colored one that I liked to call Koolaide. Your bags will depend on what type of chemo you have for your treatment. Make sure to ask what they are giving you and write it down for reference.
Treatment takes about an hour and a half. If you bring a spouse, family member, or friend, they cannot sit in the treatment room with you because of the medication present (at least mine couldn't). They will have to wait in the waiting room.
Helpful tips:
-Pack a comfy blanket or throw for your lap, magazines with cool pictures, music player, snacks, a drink, anything to help you feel as comfortable as possible.
-Eat a small protein meal before you go (I ate a PB sandwich). This will help your stomach which can be very sensitive to chemo. More on side-effects later.
-If you feel up to it try to connect with other patients and be an encouragement. This will help you also.
-If you get a bad taste in your mouth suck on lemon drops or Jolly Ranchers.
-Some people have a shot the next day after chemo to build blood cells.
Chemo has different side-effects for everyone, that is why the list is like trying to read the latest congressional health care bill. My solid advice is to stay away from the list! Only check out specific effects that are going on with you at the moment. The reason for this? If you are anything like me, I will read it and commiserate and swear I have every single one. A good website is Chemocare.com. They have a list and advice on most areas of cancer. I only had vomiting one time after the first treatment. I could eat and had an appetite the rest of the time! So remember when you've heard that everyone is sick and nauseated and can't eat it may not be right info. Eating is life for the cancer patient so go for it. Eat sensible but you can spoil yourself once in a while. There are a lot of opinions on nutrition out there and people that swear that drinking some kind of grass will cure you. You can decide for yourself but I just ate regular food and am a survivor.
Now is a good time to take care of yourself. Light candles and take scented baths (lavender is great for relaxation). Use luxurious lotions, soaps, and perfumes that you like (after shave for the men of course). Chemo effects last about a week, then you start feeling better. Call your oncologist if you have any questions or concerns and ask for help if you need it. It is ok to feel weak, tired, crabby, angry, or sad. Cry if you need to, it will help you release emotions. Hang in there and fight!
Hopefully this info will help you in your journey. Stay tuned as next time I talk about hair.
When I first pictured chemo, it was like one of those commercials for St. Judes playing in my mind. Bald, pale, and gaunt figures floating around with soft piano music in the back round. Not even close. Sure there were a couple of "hair challenged" individuals around but they usually were wearing some kind of cool head wear like myself thanks to my mom who is a crochet master in her own right. I actually heard laughing when we came close to the treatment room.
Here's what will happen:
-A nurse will help you find a chair (we had really cushy lounge types) and get you comfortable. By the way, oncology nurses are in a class by themselves. All of them I met were kind and helpful and this includes the office staff. It takes special people to do what they do on a daily basis. They will ask you a round of questions on how you are doing and any symptoms you are having. Make sure to tell them EVERYTHING even if you think it is insignificant.
-You will probably have your blood drawn, depending on the type of cancer you have to check cell, iron levels, etc. Some people have a traditional IV and others have a port which is a kind of plug in the chest to put the IV in.
-An IV bag will be brought over and hooked up for your first round of medication. I had three different bags including an orange colored one that I liked to call Koolaide. Your bags will depend on what type of chemo you have for your treatment. Make sure to ask what they are giving you and write it down for reference.
Treatment takes about an hour and a half. If you bring a spouse, family member, or friend, they cannot sit in the treatment room with you because of the medication present (at least mine couldn't). They will have to wait in the waiting room.
Helpful tips:
-Pack a comfy blanket or throw for your lap, magazines with cool pictures, music player, snacks, a drink, anything to help you feel as comfortable as possible.
-Eat a small protein meal before you go (I ate a PB sandwich). This will help your stomach which can be very sensitive to chemo. More on side-effects later.
-If you feel up to it try to connect with other patients and be an encouragement. This will help you also.
-If you get a bad taste in your mouth suck on lemon drops or Jolly Ranchers.
-Some people have a shot the next day after chemo to build blood cells.
Chemo has different side-effects for everyone, that is why the list is like trying to read the latest congressional health care bill. My solid advice is to stay away from the list! Only check out specific effects that are going on with you at the moment. The reason for this? If you are anything like me, I will read it and commiserate and swear I have every single one. A good website is Chemocare.com. They have a list and advice on most areas of cancer. I only had vomiting one time after the first treatment. I could eat and had an appetite the rest of the time! So remember when you've heard that everyone is sick and nauseated and can't eat it may not be right info. Eating is life for the cancer patient so go for it. Eat sensible but you can spoil yourself once in a while. There are a lot of opinions on nutrition out there and people that swear that drinking some kind of grass will cure you. You can decide for yourself but I just ate regular food and am a survivor.
Now is a good time to take care of yourself. Light candles and take scented baths (lavender is great for relaxation). Use luxurious lotions, soaps, and perfumes that you like (after shave for the men of course). Chemo effects last about a week, then you start feeling better. Call your oncologist if you have any questions or concerns and ask for help if you need it. It is ok to feel weak, tired, crabby, angry, or sad. Cry if you need to, it will help you release emotions. Hang in there and fight!
Hopefully this info will help you in your journey. Stay tuned as next time I talk about hair.
Sunday, January 16, 2011
The Power of NO!
It is definitely true that knowledge is power and in the case of a potentially terminal disease it is immensely important for you as a patient to gain as much knowledge as you can about your condition so that you can be proactive in your treatment. Another tip I want to share is something that I learned far too late in the game: - You have the power to make decisions about your treatment and care. I want you to know early on that you too have the power of "No."
Did you know that your doctor or caregiver works for you and not the other way around? It is your precious, blood sweat and tear bought and dearly payed for insurance that pays the bill for his precious business-grey Mercedes coupe parked out in that special doctor's parking space in the hospital parking lot. Did you know that you do not have to play the good and compliant patient and go along with every lame or flaky diagnosis, every quack cure, or sit calmly on the exam table in tears while he talks on the cell phone about his Greek vacation? (this actually happened to me).
The power of "no" came to me in the hospital like a lightning bright LED bulb. I had had just about enough. My body looked like a pin cushion from being stuck so many times. I finally had to have a port put in my chest so they could access my veins that they had completely collapsed and looked like the Santa Monica Mountains. The nurse comes in with a bag of something else to feed into my tubes (I already had three going) and tells me, "Your going to hate me but I have to start an IV for this." I calmly looked at him and said, "No your not, I have a port for that." He did not agree in so many words. I said, "See that sugar fluid bag? Unplug it, I don't need it, then plug yours in." What happened next was ground-breaking! He smiled at me and shook his head and did EXACTLY what I told him to do.
And that my friend, is the power of "no" in action. You have the power to make choices. You know your body best. It took me two months and at least four doctors and countless "procedures" to find out I did actually have something wrong with me like I THOUGHT! And the fight continues. I was sent by my oncologist to a specialist she picked for a second opinion to see if I indeed needed to receive 8 chemo treatments instead of the usual 6 with a possible hospital stay of two weeks. Now this is no ordinary specialist. She is THE premiere lymphoma UCLA specialist of specialists. She told me I was in remission and was probably cancer free from treatment 4. My oncologist called me right before Christmas to give me the news and quipped, "Well, we will give you the benefit of the the doubt." Uh, Thank you?
In conclusion I would like to strongly encourage you to ask questions, research, make proactive educated choices and decisions. It can be intimidating in that cold doctors office nodding your head with a blank "What the heck" expression. Believe me, I know, but I have faith in you. Trust me, they don't always give you the vital info you need. Just remember, you have the power!
Stay tuned as next time we tackle Chemo!
Did you know that your doctor or caregiver works for you and not the other way around? It is your precious, blood sweat and tear bought and dearly payed for insurance that pays the bill for his precious business-grey Mercedes coupe parked out in that special doctor's parking space in the hospital parking lot. Did you know that you do not have to play the good and compliant patient and go along with every lame or flaky diagnosis, every quack cure, or sit calmly on the exam table in tears while he talks on the cell phone about his Greek vacation? (this actually happened to me).
The power of "no" came to me in the hospital like a lightning bright LED bulb. I had had just about enough. My body looked like a pin cushion from being stuck so many times. I finally had to have a port put in my chest so they could access my veins that they had completely collapsed and looked like the Santa Monica Mountains. The nurse comes in with a bag of something else to feed into my tubes (I already had three going) and tells me, "Your going to hate me but I have to start an IV for this." I calmly looked at him and said, "No your not, I have a port for that." He did not agree in so many words. I said, "See that sugar fluid bag? Unplug it, I don't need it, then plug yours in." What happened next was ground-breaking! He smiled at me and shook his head and did EXACTLY what I told him to do.
And that my friend, is the power of "no" in action. You have the power to make choices. You know your body best. It took me two months and at least four doctors and countless "procedures" to find out I did actually have something wrong with me like I THOUGHT! And the fight continues. I was sent by my oncologist to a specialist she picked for a second opinion to see if I indeed needed to receive 8 chemo treatments instead of the usual 6 with a possible hospital stay of two weeks. Now this is no ordinary specialist. She is THE premiere lymphoma UCLA specialist of specialists. She told me I was in remission and was probably cancer free from treatment 4. My oncologist called me right before Christmas to give me the news and quipped, "Well, we will give you the benefit of the the doubt." Uh, Thank you?
In conclusion I would like to strongly encourage you to ask questions, research, make proactive educated choices and decisions. It can be intimidating in that cold doctors office nodding your head with a blank "What the heck" expression. Believe me, I know, but I have faith in you. Trust me, they don't always give you the vital info you need. Just remember, you have the power!
Stay tuned as next time we tackle Chemo!
Saturday, January 15, 2011
The Cancer Journey - Strap Your Belt On!
Right before Christmas I was given the news that the lymphoma that they were treating me for in my chest wasn't really lymphoma at all but scar tissue, which most people have by the way if you have ever had a illness of the lungs ( bronchitis, pneumonia, etc). To add to the mystery, I was told that I was probably cured by the fourth chemo treatment. What? Were the extra two a bonus? And I am still rumbling down the road on the cancer bus only the sign has changed on the top to "Remission."
Have you ever been told that medical science is vague at best? Why do you think it is called a "practice". There are so many things that I have had to find out on my own about symptoms and side-effects that if they were coins they would probably choke the CoinStar machine. My famous last words became "Why didn't somebody tell me about this!" So I will try and use this blog to give you the need-to-know low down on what I have learned so far. Let me know if you have anything specific and if I don't have an answer, I will research it.
In the Beginning:
-Try to wrestle as much information about your diagnosis and treatment strategy as you possibly can from your doc and write it down or as in my case have someone write it down for you (very helpful because you are confused and stressed). This goes for medications you are given also! Some docs have a nasty habit of hit and run when it comes to patients, never mind that you are in a life or death situation here.
-If you are in the hospital and on pain meds, make sure to have a "step down" plan for when you get home and wean yourself off SLOWLY. Don't go for the old "Just go home and rest" line without a med in sight. I did this after having surgery and being on heavy meds for weeks only to experience detox hell when I got home. Have them give you a prescription for recovery and take less and less until you are safe to stop.
-Have someone responsible help you with appointment scheduling and prescription pick-up if you need it. This can be invaluable when you are mentally wiped out.
-Have your oncologist doctor or nurse give you a tour of where you will be receiving chemo treatment or the same if you are having radiation. I had visions of being in a room with a bunch of gaunt, bald people and was scared to death. I found out that it just wasn't the case and actually laughed and made some good friends.
Please stay tuned as I will have more good info and tips on side-effects and other fun subjects. Thank you for checking me out and feel free to ask questions or refer someone you know who is dealing with cancer and it's effects.
-Shurie
Have you ever been told that medical science is vague at best? Why do you think it is called a "practice". There are so many things that I have had to find out on my own about symptoms and side-effects that if they were coins they would probably choke the CoinStar machine. My famous last words became "Why didn't somebody tell me about this!" So I will try and use this blog to give you the need-to-know low down on what I have learned so far. Let me know if you have anything specific and if I don't have an answer, I will research it.
In the Beginning:
-Try to wrestle as much information about your diagnosis and treatment strategy as you possibly can from your doc and write it down or as in my case have someone write it down for you (very helpful because you are confused and stressed). This goes for medications you are given also! Some docs have a nasty habit of hit and run when it comes to patients, never mind that you are in a life or death situation here.
-If you are in the hospital and on pain meds, make sure to have a "step down" plan for when you get home and wean yourself off SLOWLY. Don't go for the old "Just go home and rest" line without a med in sight. I did this after having surgery and being on heavy meds for weeks only to experience detox hell when I got home. Have them give you a prescription for recovery and take less and less until you are safe to stop.
-Have someone responsible help you with appointment scheduling and prescription pick-up if you need it. This can be invaluable when you are mentally wiped out.
-Have your oncologist doctor or nurse give you a tour of where you will be receiving chemo treatment or the same if you are having radiation. I had visions of being in a room with a bunch of gaunt, bald people and was scared to death. I found out that it just wasn't the case and actually laughed and made some good friends.
Please stay tuned as I will have more good info and tips on side-effects and other fun subjects. Thank you for checking me out and feel free to ask questions or refer someone you know who is dealing with cancer and it's effects.
-Shurie
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