I've been home from the hospital 2 weeks now. It's been 4 weeks since my ileostomy reversal and port placement surgery. My body is healing nicely, but my mind seems to be stuck in this forgetful, cloudy, lazy place. I keep asking about things that were said in the hospital. It's almost as if it might not have happened. I have evidence that it did happen though. First of all, I have these big scars on my belly. Secondly, I have the notes I wrote to myself during my hospital stay. I have my Morphine Diary.
I have a cat that lives in my room. I see its shadow and know exactly where it is. I talk to my cat even though he remains nameless.
I have many visitors in the darkness of the night. Sometimes the visitors are the people who have stayed in my room before me. They used to startle me and make me search for meaning. Now I just acknowledge them, smile and say hello. Then we go our separate ways. I hope they remember me later.
I hear people whispering my name and saying hello. I am sure that one of these voices is Death himself. He assures me that he is here and will be here again. He assures me that he knows me.
I woke up in a hotel in Europe today. I can tell it's Europe because of the 3D television.
There's someone in my bed. I'm in the bathroom and can see her head reflecting in the mirror. I can hear her walking around in my room when I am in the bathroom. She's always gone when I check my bed.
I need to readjust my car AND auto insurance.
Just because a package is a small tube doesn't mean that it's toothpaste! (I brushed my teeth with shaving cream. I had to get a new toothbrush because that filmy taste would never quite wash off.)
These are actual excerpts from my Morphine Diary, written by a strange hand in red ink. I think I borrowed the pen from a nurse. I am sure that the nurses have many drug-addled patients with silly requests. I hope I was at least a little amusing when I asked.
Monday, December 20, 2010
Monday, November 8, 2010
Advantages of an Ostomy
**********Do NOT read if you are SQUEAMISH***********
This evening finds me prepping for my Barium Study that is scheduled for 8am tomorrow. The pharmacy gave me a prep kit meant for people with a full-length normally functioning bowel. This includes 4L (yes, that is liters, and yes, that is 4L, and yes, that is 2 big soda bottles) of Golytely. Golytely is a total misnomer. It should be named Gofiercely. You get 4L of the stuff to totally cleanse your entire bowel. I was thinking that since I have only part of my bowel connected at this time, that I would not need to consume the entire contents of a jug meant for people with 25 feet of intact bowel. The radiologist told me to use my own judgement, but he also cautioned me to be sure that I was clean or I would have to repeat the whole Study. Okay, here I go......
Since I have had the pleasure of bowel prepping before, I am finding that prepping with an ostomy pouch might actually be a superior technique. I do not have to run for the toilet. I get to sit on the couch and watch my pouch fill, then I calmly go to the bathroom and empty it. Not so bad.
I don't even have to watch, I can just slip a hand to my pouch and feel if it is full. A full pouch is warm. I have a built in hand warmer.
I can just stand above the toilet and drain my pouch. I have always wanted to use the toilet standing up. I now understand the perils involved with aim. Ladies, it is not as easy as it seems.
I usually avoid eating eggs, but it was a choice on the limited diet I was offered. Eggs do not really break down. It's impossible to chew them completely and the larger bits tend to clog the works. Those bigger bits are now shooting out with enough force to make a whacking sound on the pouch. It kinda tickles and makes me laugh. I do not remember laughing during my last bowel prep.
Oh, Dr. Radiologist, my bowels will be clean. Please be kind to me.
**UPDATE**
Dr. Radiologist only took x-rays of my lower bowel, with contrast achieved with a barium enema. My whole prep procedure was a total waste of time and resources. Healthcare system FAIL! At least I lost about 4 pounds. :/
This evening finds me prepping for my Barium Study that is scheduled for 8am tomorrow. The pharmacy gave me a prep kit meant for people with a full-length normally functioning bowel. This includes 4L (yes, that is liters, and yes, that is 4L, and yes, that is 2 big soda bottles) of Golytely. Golytely is a total misnomer. It should be named Gofiercely. You get 4L of the stuff to totally cleanse your entire bowel. I was thinking that since I have only part of my bowel connected at this time, that I would not need to consume the entire contents of a jug meant for people with 25 feet of intact bowel. The radiologist told me to use my own judgement, but he also cautioned me to be sure that I was clean or I would have to repeat the whole Study. Okay, here I go......
Since I have had the pleasure of bowel prepping before, I am finding that prepping with an ostomy pouch might actually be a superior technique. I do not have to run for the toilet. I get to sit on the couch and watch my pouch fill, then I calmly go to the bathroom and empty it. Not so bad.
I don't even have to watch, I can just slip a hand to my pouch and feel if it is full. A full pouch is warm. I have a built in hand warmer.
I can just stand above the toilet and drain my pouch. I have always wanted to use the toilet standing up. I now understand the perils involved with aim. Ladies, it is not as easy as it seems.
I usually avoid eating eggs, but it was a choice on the limited diet I was offered. Eggs do not really break down. It's impossible to chew them completely and the larger bits tend to clog the works. Those bigger bits are now shooting out with enough force to make a whacking sound on the pouch. It kinda tickles and makes me laugh. I do not remember laughing during my last bowel prep.
Oh, Dr. Radiologist, my bowels will be clean. Please be kind to me.
**UPDATE**
Dr. Radiologist only took x-rays of my lower bowel, with contrast achieved with a barium enema. My whole prep procedure was a total waste of time and resources. Healthcare system FAIL! At least I lost about 4 pounds. :/
Thursday, October 28, 2010
The Good Life
As I mentioned before, those 5 stages of grief (denial, anger, bargaining, depression, acceptance) are slippery. I have been sliding back and forth for awhile now. Today finds me happily ensconced in acceptance. I am thinking that ovarian cancer can be a manageable chronic disease. I am thinking that even though I live with cancer, I can still live pretty good.
For a moment today, traffic came to stop as a little blond chihauhau raced down the middle of the street. I tried to follow him and coax him into my car, but he was too skittish and ran down the road the opposite way. He was FAST and I lost sight of him. I am sad to think of his fate and even sadder to think of his owner. I greeted my own pooch more enthusiastically upon my return home.
For a moment today, traffic came to a stop as a frazzled woman tried to restart her older model pickup that had stalled in the intersection. I was preparing to stop and help (how I was going to help I don't know) when the engine roared to life and she drove off. I drove off in my newer model car that has only stalled out when I can't manage the clutch properly.
For a moment today, traffic came to stop at the red light on the corner of the street where the homeless have set up camp. The city allows them to stay there and has dubbed this area "Tent City". Tent City has a population of several hundred at any given time. The light turned green and I drove to my home, that has a roof and a bed and food in the fridge.
The evidence is in and it shows that even though I live with cancer, I still live pretty good. All these things happened on the way home from the fabric store where I wanted to pick up a seam gauge to replace the one I lost. The store was sold out, but as I looked around, I found fabric that I really liked. So I got some yardage. Over $100 worth of yardage. Oh wait, only $80 worth of yardage because $20 was for a bobbin winder. Best thing ever invented. But I digress. The point is that I am able to enjoy a hobby. And I have semi-concrete plans for every inch of those textiles.
For a moment today, traffic came to stop as a little blond chihauhau raced down the middle of the street. I tried to follow him and coax him into my car, but he was too skittish and ran down the road the opposite way. He was FAST and I lost sight of him. I am sad to think of his fate and even sadder to think of his owner. I greeted my own pooch more enthusiastically upon my return home.
For a moment today, traffic came to a stop as a frazzled woman tried to restart her older model pickup that had stalled in the intersection. I was preparing to stop and help (how I was going to help I don't know) when the engine roared to life and she drove off. I drove off in my newer model car that has only stalled out when I can't manage the clutch properly.
For a moment today, traffic came to stop at the red light on the corner of the street where the homeless have set up camp. The city allows them to stay there and has dubbed this area "Tent City". Tent City has a population of several hundred at any given time. The light turned green and I drove to my home, that has a roof and a bed and food in the fridge.
The evidence is in and it shows that even though I live with cancer, I still live pretty good. All these things happened on the way home from the fabric store where I wanted to pick up a seam gauge to replace the one I lost. The store was sold out, but as I looked around, I found fabric that I really liked. So I got some yardage. Over $100 worth of yardage. Oh wait, only $80 worth of yardage because $20 was for a bobbin winder. Best thing ever invented. But I digress. The point is that I am able to enjoy a hobby. And I have semi-concrete plans for every inch of those textiles.
Sunday, October 24, 2010
No. Nope. Nein. Non. Nyet.
Found this at a great site http://www.cafepress.com/. They sell all kinds of tshirts, buttons, hats, mugs, bags, etc that are basically design your own, but you can offer your design to others if you would like. This made me laugh out loud because it exemplifies my point of view. Mainly, my point of view is that nothing else matters to me right now, especially politics.
I live in a state that has been in the national microscope lately because of a close Senate race. The organizations call me every day and ask me about my intentions of voting. I tell them I might vote if my chemo wears off by then, I might vote if I can get out of bed by then, I might vote if I feel better, I might vote if I cared. It may be rude to those poor polltakers, but cancer has skewed my priorities at the moment. I am selfish at the moment. Cancer has given me permission to say no.
Those of you who know me recognize that fact that I have had trouble saying no. Not so much anymore. Saying no to those things that I don't want to do is the best possible way to take care of myself. Then I can be the best, strongest, healthiest me possible. Even the airlines instruct you to help yourself first. Why is it so hard to say no? Why do I feel rude if I say no? (Shrug.) All I can say is, I am going to take care of this little corner of my universe first, then I can help you with yours.
Tuesday, October 19, 2010
Searching.............
I'm floundering. I'm not sure I know how to live the rest of my life. I have been through the "mother-of-all-surgeries" and learned that my body is resilient and can heal. I have been through chemotherapy and learned that I have strength. I have been through the weekly blood draws, the neutropenia, the thrombocytopenia, the blood transfusions, the nausea, the vomiting (only once), the aching bones, the sleepless nights, the relentless hot flashes, the loss of ALL my hair (everything except eyelashes) and I have persevered. I have changed the way I eat in order to more fully nourish my stressed body. I have learned how to care for Oscar, my ostomy. Believe me, when you get to empty Oscar's little collection pouch 6 times a day, you get to witness first hand the results of your food choices. (Choose wisely, my friend.) I have pampered my body, focusing on it's every need for 6 months now. And we have acheived some degree of stasis and established a new status quo, a new "normal". But I think I have forgotten how to live.
Cancer is a word that brings one thought to mind, death. My cancer diagnosis did that to me. I learned about estate planning, advanced directives, durable powers-of-attorney, wills, all that stuff. I told my financial advisor that I needed to cash out all my savings. (She talked me out of it.) I thought of all the things I hoped to do in my retirement years and paniced when I realized that my time would expire before I was done. I am not afraid to die and I was preparing to do just that. I was focusing on my death.
Fast forward 6 months to today. While I recognize that ovarian cancer will eventually kill me, it won't kill me today. And probably not even tomorrow or next week or next month. I have time. I am not sure what to do with that time. My doctor told me today "Do not forget to live." What if I have already forgotten? How do I remember? I don't know yet. I don't even know what to do this afternoon. I can't even think of a pithy title for this entry.
Cancer is a word that brings one thought to mind, death. My cancer diagnosis did that to me. I learned about estate planning, advanced directives, durable powers-of-attorney, wills, all that stuff. I told my financial advisor that I needed to cash out all my savings. (She talked me out of it.) I thought of all the things I hoped to do in my retirement years and paniced when I realized that my time would expire before I was done. I am not afraid to die and I was preparing to do just that. I was focusing on my death.
Fast forward 6 months to today. While I recognize that ovarian cancer will eventually kill me, it won't kill me today. And probably not even tomorrow or next week or next month. I have time. I am not sure what to do with that time. My doctor told me today "Do not forget to live." What if I have already forgotten? How do I remember? I don't know yet. I don't even know what to do this afternoon. I can't even think of a pithy title for this entry.
Monday, October 11, 2010
Bad Days Happen Too
I want to thank everyone who reads these things. I try to keep a positive spin on things when I am writing. Doing that helps me help myself. It teaches me how to focus on the positive side. But sometimes I fail. Sometimes I have bad days. I feel the need to share those days too. I want to represent a more accurate capsule of my existence. Ready, go.....
All this chemo is finally catching up to me. I left the house to have lunch and go shopping with my cousin and somewhere picked up a cold. I have very few white blood cells, thus no immunity, so it wasn't very hard to get sick. I avoid crowds of people because they are so...germy. I am kicking myself for obviously dropping my guard and neglecting my sanitizer. I have been taking iron tablets because I don't have any red blood cells either and those tablets make me really nauseous. Then I take my nausea meds and those make me really tired. Throw some cold medication on top of that and I am useless for hours. I had to drag my pitiful body to the lab twice today. I used to park in the farthest spot and walk to get some exercise. Today I parked right by the elevator. I am short of breath and tired and pale white. It turns out that I have even fewer red blood cells than I thought, my doctor has ordered a transfusion of 2 units of blood. I look like a ghost, a bald ghost. I am the same color I remember being before my surgeries. This makes me worry about the cancer becoming resistant to treatment and growing again. I am actually relieved to find out I only need some red blood cells. If I can only make it until tomorrow, because I feel like a wet pile of noodles. I am emotionally friable and cry at the drop of a kind word. And I have a huge spider bite on my elbow.
Whew, that's it. Thanks for reading.
All this chemo is finally catching up to me. I left the house to have lunch and go shopping with my cousin and somewhere picked up a cold. I have very few white blood cells, thus no immunity, so it wasn't very hard to get sick. I avoid crowds of people because they are so...germy. I am kicking myself for obviously dropping my guard and neglecting my sanitizer. I have been taking iron tablets because I don't have any red blood cells either and those tablets make me really nauseous. Then I take my nausea meds and those make me really tired. Throw some cold medication on top of that and I am useless for hours. I had to drag my pitiful body to the lab twice today. I used to park in the farthest spot and walk to get some exercise. Today I parked right by the elevator. I am short of breath and tired and pale white. It turns out that I have even fewer red blood cells than I thought, my doctor has ordered a transfusion of 2 units of blood. I look like a ghost, a bald ghost. I am the same color I remember being before my surgeries. This makes me worry about the cancer becoming resistant to treatment and growing again. I am actually relieved to find out I only need some red blood cells. If I can only make it until tomorrow, because I feel like a wet pile of noodles. I am emotionally friable and cry at the drop of a kind word. And I have a huge spider bite on my elbow.
Whew, that's it. Thanks for reading.
Monday, October 4, 2010
Befriending My Body
I was angry at my body for awhile. I felt betrayed. I felt like I certainly didn't deserve cancer. The risk factors for ovarian cancer include a positive family history, having BRCA1 or BRCA2 genes, age, not having children, taking fertility drugs, taking estrogen post-menopause, and obesity. Out of all those things, I am only guilty of not having any children and having plenty of fat. I score 2/7. I know plenty of fat women without kids who do NOT have ovarian cancer. Why me? Who knows? I hated the cancer cells in my body. I wanted them scraped out and burned. I wanted those cells destroyed. Cancer was an opponent, an enemy to be fought and conquered. Cancer put me on the defensive. Cancer eclipsed my self.
Sometime after surgery, I studied my body in the mirror. My gosh, my scar ran from my sternum all the way down to my pudendum (my girlie parts). 13 inches of bright red scar tissue railroad-marked with 2 sets of staple scars. I have a stab scar from my drain. I have 2 more stab scars from the laprascopy. My belly button is MIA. And my horrible gaping ostomy and fistula are the stars of my belly. These scars hold my belly together, while my body slowly fills in the hollows where tumors used to reside. Cancer left me empty.
One day while driving home from the grocery, it dawned on me. My body has started to heal. After 3 surgeries and weeks of wound care and weeks of bloodtests and chemotherapy, my body needs a friend. My body needs an ally. I need to nurture this body. Treat it kindly. It did not deserve cancer, but it definitely deserves a break. That's the day I gave up my anger and hatred. I have taken up the task of advocacy for my tattered body. I feed it the best nutrients. I give it all the rest it needs. I make it flex it's muscles now and then. I switched game plans from the defensive to the offensive. It feels much calmer on this side. I am better able to be my own friend. I am reunited with my body now, we are one and the same. I might even be better than I was before this all started. I am transforming Cancer by stealing his energy (why is Cancer male? Don't know, but he is) and funneling it into my own plan for me, myself and I. Cancer is not my friend, but he has given me impetus to being a more positive person. I win!
Sometime after surgery, I studied my body in the mirror. My gosh, my scar ran from my sternum all the way down to my pudendum (my girlie parts). 13 inches of bright red scar tissue railroad-marked with 2 sets of staple scars. I have a stab scar from my drain. I have 2 more stab scars from the laprascopy. My belly button is MIA. And my horrible gaping ostomy and fistula are the stars of my belly. These scars hold my belly together, while my body slowly fills in the hollows where tumors used to reside. Cancer left me empty.
One day while driving home from the grocery, it dawned on me. My body has started to heal. After 3 surgeries and weeks of wound care and weeks of bloodtests and chemotherapy, my body needs a friend. My body needs an ally. I need to nurture this body. Treat it kindly. It did not deserve cancer, but it definitely deserves a break. That's the day I gave up my anger and hatred. I have taken up the task of advocacy for my tattered body. I feed it the best nutrients. I give it all the rest it needs. I make it flex it's muscles now and then. I switched game plans from the defensive to the offensive. It feels much calmer on this side. I am better able to be my own friend. I am reunited with my body now, we are one and the same. I might even be better than I was before this all started. I am transforming Cancer by stealing his energy (why is Cancer male? Don't know, but he is) and funneling it into my own plan for me, myself and I. Cancer is not my friend, but he has given me impetus to being a more positive person. I win!
Wednesday, September 29, 2010
Quote-of-the-Day
When you have cancer you worry that every new develop in your body is a sign that the cancer is worsening. I was worried that a smallish pocket of tissue in my belly was ascites, or fluid in my belly which can be a sign of tumor growth. So at my last appointment as he was palpating my belly, I asked him about the spot. He felt for a second then loudly proclaimed, "I am happy to announce that that is just fat." You are priceless, Dr. Lim. :)
Sunday, September 26, 2010
The Road Ahead
I like to drive. I like to drive on the roads of wide, open, unpopulated spaces. This is the road to Gerlach, Nevada and the Black Rock Desert. It's a straight shot for about 60 miles. Perfect for the meditative process. Driving this road yesterday reminded me of my life. I can see the road. It's clearly marked. I know where it ends up. I have no fear of the destination. But sometimes I can only see a little bit of the road. It seems to end at the horizon. As I get closer and closer, I recognize a little anxiety about what lies just over the crest, the part of the road I cannot see. I know that the road continues even though it's unseen. I question which way does it go? Does it curve and if it does curve, which way? Will I be able to maintain control? What lies just over the crest? An obstacle that blocks my path? Am I prepared for an obstacle? And then I reach the crest and can see the next stretch of road, my questions are answered and I know that I can navigate without any trouble and I continue down the road. And so on and so on. C'est la vie.
Saturday, September 18, 2010
My Buddy Cancer
Cancer is a bully. When you aren't paying attention, he grabs your elbow and pulls you along at breakneck speed. He pulls hard and fast. He pushes you past insurmountable brick walls and you wonder if he is going to push you into those bricks. He drags you to the edge of towering cliffs and you wonder if he is going to whip you over that edge. Your heart is pounding. You are afraid. Cancer is in complete control and you are losing.
Cancer is too strong to beat with one schoolyard fight during recess. This fight will be long and last until the end of your life. You resist. You resist by getting treatments, by taking care of yourself. Your resistance is heavy, heavy enough to be the anchor that keeps you from plummeting over the edge of that cliff. Aannndddd......things slowww dooowwwnn. You can catch your breath. You can speak without shrieking. Cancer is still anchored to your elbow, but he is not winning today. And that is exhilarating.
You will live your life with your buddy, the bully Cancer, by your side. Sometimes he will be the lead of the bullwhip and you will be flung helplessly around. Sometimes you will be the strong one, standing firmly in defiance. Those will be your good days. Hopefully, on the grand scale of life, the balance of your days will weigh positive.
Cancer is too strong to beat with one schoolyard fight during recess. This fight will be long and last until the end of your life. You resist. You resist by getting treatments, by taking care of yourself. Your resistance is heavy, heavy enough to be the anchor that keeps you from plummeting over the edge of that cliff. Aannndddd......things slowww dooowwwnn. You can catch your breath. You can speak without shrieking. Cancer is still anchored to your elbow, but he is not winning today. And that is exhilarating.
You will live your life with your buddy, the bully Cancer, by your side. Sometimes he will be the lead of the bullwhip and you will be flung helplessly around. Sometimes you will be the strong one, standing firmly in defiance. Those will be your good days. Hopefully, on the grand scale of life, the balance of your days will weigh positive.
Tuesday, September 7, 2010
Sunday, September 5, 2010
The Bald Head
I woke up this morning, fetched the paper, refilled my water glass and then took my shower. As I stepped out of the shower, I caught a glimpse of myself in the mirror. Specifically a glimpse of some bald lady. I was shocked for a split second before I realized that I was looking at my own reflection. Then I remembered, oh yeah, you have a bald head because of your chemo because you have cancer. My bald head is a badge of my disease that I am forced to wear. It has robbed me of my identity and my privacy.
My bald head outs me as a cancer patient. People stare. And they know something intensely personal about me just by looking at me. I attended a charity event that benefited the American Cancer Society. There was a booth selling crazy hats. I thought that was a magnificent idea and wanted to try on some of the hats. I whipped the scarf off my bald head and there it was, the stare. The acknowledgment that I was one of them, one of those unfortunate people with cancer. Maybe I am only uncomfortable with this when I sense pity. Nothing steals strength faster than pity.
My bald head sometimes garners me a little extra kindness. The grocery clerks are more patient. The banker rushes to assist me. Strangers hold the door a moment longer. What is counter-intuitive is that children are not afraid to ask me about my head. I welcome those questions and the dialogues that can follow. These are the interactions that give me strength.
That moment in the mirror this morning startled me. It reminded me that I have cancer. That must be what happens to some people when they first catch sight of the bald head. She has cancer. I remember that initial shock. It is blinding and consuming. I have had time to deal with this fact, I guess I can wait until they catch up. I can accept that fact that they know me as "the lady with cancer". I can accept that fact that they know some of my personal issues without me telling them. I reject the pity. I look forward to accepting kindness, hopefully with grace.
My bald head outs me as a cancer patient. People stare. And they know something intensely personal about me just by looking at me. I attended a charity event that benefited the American Cancer Society. There was a booth selling crazy hats. I thought that was a magnificent idea and wanted to try on some of the hats. I whipped the scarf off my bald head and there it was, the stare. The acknowledgment that I was one of them, one of those unfortunate people with cancer. Maybe I am only uncomfortable with this when I sense pity. Nothing steals strength faster than pity.
My bald head sometimes garners me a little extra kindness. The grocery clerks are more patient. The banker rushes to assist me. Strangers hold the door a moment longer. What is counter-intuitive is that children are not afraid to ask me about my head. I welcome those questions and the dialogues that can follow. These are the interactions that give me strength.
That moment in the mirror this morning startled me. It reminded me that I have cancer. That must be what happens to some people when they first catch sight of the bald head. She has cancer. I remember that initial shock. It is blinding and consuming. I have had time to deal with this fact, I guess I can wait until they catch up. I can accept that fact that they know me as "the lady with cancer". I can accept that fact that they know some of my personal issues without me telling them. I reject the pity. I look forward to accepting kindness, hopefully with grace.
Wednesday, August 4, 2010
The Aha Moment
Have you seen those ads on TV that ask you what is your "Aha" moment? Supposedly this is the moment when you realize your purpose in life and can follow your path forward to blissful ever after. The ad suggests that this moment is when you realize your artistic talent or find your soul mate or some other romantic bullshit. That's right, I said bullshit. Let me be the first to tell you that your Aha Moment is the moment when your life changes beyond recognition into something you could never have fathomed in your wildest dreams. The moment after which nothing is ever the same. I know my Aha Moment. It is 1:30 pm on April 7, 2010. This is when my doctor confirmed that I had ovarian cancer. Aha.
In the months following that fateful micro-second of time, I have struggled with the classic grief process. You know, denial, anger, bargaining, depression, and acceptance. This is not a smooth path, nor is it chronological or progressive. I had a small moment of denial right after surgery when I awoke for the first time and had fleeting hopes that I might have been dreaming. Then I said to myself "holy fuck, it's real". That's a direct quote. I won't bore you with the insipid details of my emotional and spiritual ambiguity since then. My point is this, that a horrible terrible thing can bring positive change to your life. Aha.
Having cancer has taught me to SLOW DOWN. Why hurry? You cannot possibly assimilate everything happening along your path when you are moving so fast. Take the next step, one step at a time. You cannot possibly know the future, so address what is in front of you at this moment. Laugh with your friends. Do what you want and don't do what you don't want. Make the effort to connect. Enjoy what you can. Be kind. Don't be the person (like me) that has to be struck by cancer to realize these things. It's a hecka wake-up call. My diagnosis has brought me to a blessed, centered and serene place. It's a rough way to get here, but I'm finally here. Aha.
In the months following that fateful micro-second of time, I have struggled with the classic grief process. You know, denial, anger, bargaining, depression, and acceptance. This is not a smooth path, nor is it chronological or progressive. I had a small moment of denial right after surgery when I awoke for the first time and had fleeting hopes that I might have been dreaming. Then I said to myself "holy fuck, it's real". That's a direct quote. I won't bore you with the insipid details of my emotional and spiritual ambiguity since then. My point is this, that a horrible terrible thing can bring positive change to your life. Aha.
Having cancer has taught me to SLOW DOWN. Why hurry? You cannot possibly assimilate everything happening along your path when you are moving so fast. Take the next step, one step at a time. You cannot possibly know the future, so address what is in front of you at this moment. Laugh with your friends. Do what you want and don't do what you don't want. Make the effort to connect. Enjoy what you can. Be kind. Don't be the person (like me) that has to be struck by cancer to realize these things. It's a hecka wake-up call. My diagnosis has brought me to a blessed, centered and serene place. It's a rough way to get here, but I'm finally here. Aha.
Thursday, July 29, 2010
The Addict by Michael Stein
This book is a MUST READ for all pharmcy people. Written by a physician who treats addicts as an inside look into the addict's head. That's what I wanted to get when I picked up this book, an inside look into why an addict does what he/she does. As a pharmacist, I struggle to understand and not judge when I am helping these people. I believe that they have a medical problem that carries severe personal and social burdens. Addicts will often act out at me at the pharmacy counter. It's very hard not a take their outbursts and insults personally. I just say to myself that their disease is talking, not really the patient. If I could just understand their head, then maybe I could help them better. Maybe we could have a positive interaction instead of the inevitable conflict that spirals down into anger for both of us. This book helped me a little with that. Mostly, Stein let me look into his head. I loved this. He had the same doubts. He has some misgivings. Some days, he wonders if he is actually helping his patients at all. He is so honest and forthcoming about addiction from the treatment side. I can personally relate when he says that a good day is when he is moved by a patient, when he is reminded that he is involved. My favorite quote is "I am a great protector of sad memories and I carry my own, which I visit regularly". I think that this shows us that we are not so different, the addicts and the not-addicts. The mystery is in why that addict chooses their path. Stein reminds us that some economists say that substance abuse follows the same economic pattern as basic supply and demand. My question is this, why so some of us choose that market? We may never know an answer exact enough for my scientific brain. Stein reassures me though, that I am not the only healthcare provider who struggles with these questions and just-out-of-grasp answers.
Thursday, July 15, 2010
Now accepting all hat donations!
One of the most common side effects of chemotherapy is hairloss. It's not IF you lose you hair, but WHEN you lose your hair. This is usually about 14 days after your first treatment. I am at day 7. I know that I will be bald in about a week.
Since I first got the news that I had Stage 3 ovarian cancer, I have tried to maintain some amount of normalcy in my life. I have tried to prepare for treatment in order to minimize the impact on my normal life. I read all the information the nurses and volunteers give me. As a matter of fact, I usually read everything twice. I try to make healthy nutrient rich food choices in my diet, giving up many of my favorite things like coffee, beer & junk food. I learned all about my ostomy and the diet restrictions and the products needed to care for Oscar. Yes, I named my ostomy. Sometimes he is quite vocal and grouchy, and he is a slob. He doesn't clean up after himself at all. I learned all about my wound-vac machine and how to change the dressings for my slowly healing incision. I learned how to change the collection container filled with blood, serum and pus. I had a lot to learn, and quickly. I got a super short hair cut to prepare for the inevitable hair loss. I think all these things helped me to maintain my sense of control over what is happening to me. My sense of empowerment was bolstered by all these activities.
Now, about 12 weeks post-surgery, I have settled into the routine of being a cancer patient. My new diet and food choices are more habit now. I prepare most of my food and am looking forward to using the recipes from a new cookbook I bought today, "The Cancer-Fighting Kitchen". I have plenty of time to shop for groceries and cook because my doctor extended my disability leave until the end of the year. I have tamed Oscar. He usually behaves these days. Dr. Lim removed the wound-vac dressings and my incisions are sealed and healing more every day. I can pass for a normal person in public. I don't look sick or encumbered with medical equipment . You might think, "Yay, that sounds so good for my friend. You go girl!". But passing for normal denies my truth.
My truth will be revealed to all by my bald head. My sense of empowerment is wobbly. I need to redefine my sense of self. My dad has volunteered to clip my hair into a super stylish buzzcut. But this will force me into the bright daylight of the reality of having cancer. I am still skirting the shadowy sidelines, not yet wanting to be recognized as a cancer patient by passersby. So I am going to take the leap. I will take up my dad's offer and get a super stylish buzzcut before I wake up to clumps of hair on my pillow. A girl needs empowerment.
Since I first got the news that I had Stage 3 ovarian cancer, I have tried to maintain some amount of normalcy in my life. I have tried to prepare for treatment in order to minimize the impact on my normal life. I read all the information the nurses and volunteers give me. As a matter of fact, I usually read everything twice. I try to make healthy nutrient rich food choices in my diet, giving up many of my favorite things like coffee, beer & junk food. I learned all about my ostomy and the diet restrictions and the products needed to care for Oscar. Yes, I named my ostomy. Sometimes he is quite vocal and grouchy, and he is a slob. He doesn't clean up after himself at all. I learned all about my wound-vac machine and how to change the dressings for my slowly healing incision. I learned how to change the collection container filled with blood, serum and pus. I had a lot to learn, and quickly. I got a super short hair cut to prepare for the inevitable hair loss. I think all these things helped me to maintain my sense of control over what is happening to me. My sense of empowerment was bolstered by all these activities.
Now, about 12 weeks post-surgery, I have settled into the routine of being a cancer patient. My new diet and food choices are more habit now. I prepare most of my food and am looking forward to using the recipes from a new cookbook I bought today, "The Cancer-Fighting Kitchen". I have plenty of time to shop for groceries and cook because my doctor extended my disability leave until the end of the year. I have tamed Oscar. He usually behaves these days. Dr. Lim removed the wound-vac dressings and my incisions are sealed and healing more every day. I can pass for a normal person in public. I don't look sick or encumbered with medical equipment . You might think, "Yay, that sounds so good for my friend. You go girl!". But passing for normal denies my truth.
My truth will be revealed to all by my bald head. My sense of empowerment is wobbly. I need to redefine my sense of self. My dad has volunteered to clip my hair into a super stylish buzzcut. But this will force me into the bright daylight of the reality of having cancer. I am still skirting the shadowy sidelines, not yet wanting to be recognized as a cancer patient by passersby. So I am going to take the leap. I will take up my dad's offer and get a super stylish buzzcut before I wake up to clumps of hair on my pillow. A girl needs empowerment.
Friday, July 9, 2010
Ovarian Cancer Research Fund
OCRF
Sleeping the day away after my first chemo treatment, I dreamily remember a television ad I saw promoting a QVC sponsored event that raises money for the early detection of ovarian cancer. The symptoms are vague and easy to attribute to the natural process of aging. Symptoms like bloating, tiredness, backache, constipation can be common complaints for any woman, any day of her life. Perhaps if we all were more aware, 80% of us would not have to be initially diagnosed with Stage 3 Ovarian Cancer. Perhaps we would have sought medical care earlier, during the first stages, where survival rates are remarkably higher. We NEED to spread the word.
Sleeping the day away after my first chemo treatment, I dreamily remember a television ad I saw promoting a QVC sponsored event that raises money for the early detection of ovarian cancer. The symptoms are vague and easy to attribute to the natural process of aging. Symptoms like bloating, tiredness, backache, constipation can be common complaints for any woman, any day of her life. Perhaps if we all were more aware, 80% of us would not have to be initially diagnosed with Stage 3 Ovarian Cancer. Perhaps we would have sought medical care earlier, during the first stages, where survival rates are remarkably higher. We NEED to spread the word.
Tuesday, June 22, 2010
Must read for medical professionals
Every medical professional should read the book, "The Immortal Life of Henrietta Lacks" by Rebecca Skloot. It explores the legal, ethical and moral issues behind tissue collection. Who owns tissue samples? Who can profit from the tissue samples? If we place restrictions on tissue samples, what effect would that have on the capitalistic profit model that drives medical research? Should the donor share in the profits from their own sample? I don't know the answers, but we should at least start to address these issues.
Sunday, April 18, 2010
Home is Where the Heart Is
I have spent the days before my cancer surgery tidying the house. I went through piles of mail that have sat untouched on the kitchen table for as long as a year. I washed loads of laundry until I had nothing left to wash. I returned things to their proper place in the house. I discarded old magazines and mail-order catalogs. I purged drawers and files. I swept down the cobwebs shadowing the corners of the ceiling. I found the carkeys missing since last summer. I threw out dysfunctional, broken down things. I wasn't thinking as I was doing all this. I was just moving. The more trivial the chore, the more I felt the need to get it done.
The process was gratifying not only in that I could see what I had accomplished, but also that I could see my space. Of course I mean the physical spaces of the house, but I also mean the vast room left in my heart and soul. Somehow by clearing my physical space, I created room to breathe, room to thrive. I hung my pink flamingo patio lights over my windows. I thumbtacked pictures I liked wherever I liked. Tonight, the night before my very scary surgery, I look around and finally recognize what I have done. I have obviously kept fear at bay with mundane simple tasks. I have more subtly and unconsciously created a healing environment for my body and my soul. And I symbolically have laid the groundwork for my surgeon, Dr. Lim. As I have cleaned out the debris and dross from my house, the home of my body, Dr. Lim can clean out the cancer from my body, the home of my soul. I feel strenghth tonight.
The process was gratifying not only in that I could see what I had accomplished, but also that I could see my space. Of course I mean the physical spaces of the house, but I also mean the vast room left in my heart and soul. Somehow by clearing my physical space, I created room to breathe, room to thrive. I hung my pink flamingo patio lights over my windows. I thumbtacked pictures I liked wherever I liked. Tonight, the night before my very scary surgery, I look around and finally recognize what I have done. I have obviously kept fear at bay with mundane simple tasks. I have more subtly and unconsciously created a healing environment for my body and my soul. And I symbolically have laid the groundwork for my surgeon, Dr. Lim. As I have cleaned out the debris and dross from my house, the home of my body, Dr. Lim can clean out the cancer from my body, the home of my soul. I feel strenghth tonight.
Thursday, April 15, 2010
The Holycrap! Look
I tackled all my pre-op tests today. I have been swept up into the current healthcare system. I now recognize the Holycrap! Look from some healthcare professionals. The Holycrap! Look is an expression of surprise, fear, pity and basic "OMFG! I'm glad it's not me". It's hard to maintain dignity and confidence after receiving one of these glances. I felt my protective cocoon waver and wobble. I took a moment in the ladie's room to breathe. Three times. The pre-admitting clerk gave me the Look when I told her I will be staying for 14 days. The case manger gave me the Look when I verified what procedures will be performed and then again when she verified my age. I am beginning to hate that expression on their faces. It reminds me of my vulnerability.
Monday, April 12, 2010
Pharmgirll, MEC
I've been watching too much tv this week. Probably because I have been forced to sleep on my back during my recovery and the only place I can do that comfortably is on the couch. Don't get me wrong, I can sleep on my back on the bed, but I can't get OUT of the bed....
One of my favorite shows is a medical show and the writers got some drug info wrong tonight...again. How hard is it to verify medical information? When writing a medical drama? Surely there is at least one consultant on staff? Maybe that will be my new profession...Pharmgirll, Medical Entertainment Consultant.
One of my favorite shows is a medical show and the writers got some drug info wrong tonight...again. How hard is it to verify medical information? When writing a medical drama? Surely there is at least one consultant on staff? Maybe that will be my new profession...Pharmgirll, Medical Entertainment Consultant.
Saturday, April 10, 2010
The Other Side of the Counter
I have tried to share with y'all some of the most humorous tidbits of my days behind the pharmacy counter. My stories will now move to the other side of the counter as I move from the role of the pharmacist to the role of the patient. I was diagnosed with ovarian cancer on Wednesday. How does one go from a seemingly healthy productive member of society to a (whisper) cancer patient in 6 months? I can't really answer that question. Shouldn't I have known that I was that sick? Maybe not. I can't place blame on anyone, even myself. The symptoms of ovarian cancer are vague and attributable of other things.
Ovarian Cancer Symtpoms:
*bloating and/or feeling of fullness
*Frequent urination
*indigestion/gas or constipation/diarrhea
*fatigue and/or back pain
*Pelvic or abdominal pain
*Shortness of breath
*abnormal bleeding
If any of these symptoms last more than 2 weeks, see your gynecologist.
80% of ovarian cancer cases are diagnosed at Stage III. The goal of treatment is aggressive cytoreductive surgery to reduce the mass of the tumors to a microscopic size, then chemotherpy to kill the cells left behind. Only 30% of patients survive 5 years beyond diagnosis.
Me? I am scheduled for this surgery on April 19 where the oncologist will remove my uterus, ovaries, fallopian tubes, omentum and part of my bowel. He might have to resection my diaphragm and/or spleen if he finds any tumors at those sites. There is a chance that I will wake up with a colostomy. I will definitely wake up with a intraperitoneal port for my future chemotherapy treatments which will last at least 6 months. I will have a huge nasty scar.
I can't look back and search for "what if?" moments. I have to look forward into treatment and fighting the battle of my life. My life has changed forever. I feel the worst for my family and friends. It's hard to look at the fear and pain on their faces and hear it in their voices. It's hard to believe that I am that sick. I feel kinda blah, not (whisper) cancer-stricken. I vacillate between spurts of productivity, grief, clinical planning, and staring out the window. This week before this surgery will seem so long. It has only been 72 hours since I got the news and my world was turned upside-down, inside-out and singularly focused on this thing, this (whisper) cancer.
Ovarian Cancer Symtpoms:
*bloating and/or feeling of fullness
*Frequent urination
*indigestion/gas or constipation/diarrhea
*fatigue and/or back pain
*Pelvic or abdominal pain
*Shortness of breath
*abnormal bleeding
If any of these symptoms last more than 2 weeks, see your gynecologist.
80% of ovarian cancer cases are diagnosed at Stage III. The goal of treatment is aggressive cytoreductive surgery to reduce the mass of the tumors to a microscopic size, then chemotherpy to kill the cells left behind. Only 30% of patients survive 5 years beyond diagnosis.
Me? I am scheduled for this surgery on April 19 where the oncologist will remove my uterus, ovaries, fallopian tubes, omentum and part of my bowel. He might have to resection my diaphragm and/or spleen if he finds any tumors at those sites. There is a chance that I will wake up with a colostomy. I will definitely wake up with a intraperitoneal port for my future chemotherapy treatments which will last at least 6 months. I will have a huge nasty scar.
I can't look back and search for "what if?" moments. I have to look forward into treatment and fighting the battle of my life. My life has changed forever. I feel the worst for my family and friends. It's hard to look at the fear and pain on their faces and hear it in their voices. It's hard to believe that I am that sick. I feel kinda blah, not (whisper) cancer-stricken. I vacillate between spurts of productivity, grief, clinical planning, and staring out the window. This week before this surgery will seem so long. It has only been 72 hours since I got the news and my world was turned upside-down, inside-out and singularly focused on this thing, this (whisper) cancer.
Thursday, March 11, 2010
Tuesday, March 9, 2010
Thursday, February 18, 2010
For the want of a button....
My work uniform is my White Pharmacist Coat. It takes a beating. I spill cough syrup. I dribble coffee. I drip pizza sauce. It has a permanent gray shadow from the ink of the prescription labels. My once pristine honorable White Pharmacist Coat has multiple ink scars. It has frayed cuffs but only on the bottom portion of the cuff that rubs on the counter for 10 hours a day. This probably describes every pharmacist's White Coat. My White Pharmacist Coat is special because it is always missing the middle button. I stand the exact height to where the middle button is level with the edge of the counter and it is only a matter of time before pop goes the button. My technicians and I scour the floor to find the escaped button and I put the button in a vial where I collect all the escaped buttons, countless in number after these 22 years in practice. Today I decided that I need the Buttoneer, that gadget sold on tv in the wee hours of the morning, to reattach my buttons. (Nobody should be subjected to the pharmacist's belly). I looked online to see where I can purchase a Buttoneer to restore the integrity of my White Pharmacist Coat. Amazon has everything! But for that price I think I will shop around.
Thursday, January 28, 2010
Wednesday, January 27, 2010
Wednesday, January 20, 2010
May I have generic please?
One of my favortie little old ladies was concerned about the rising price of her medication, which is a branded blood pressure medication. I suggested that she discuss this with her doctor at her next appointment and they can switch to a drug that is available generically. This is what I got back.
"Please dispense ethylmethyl aminoethoxymethyl 4-2chlorophenyldihydro6methylpyridinedicarboxylate monobenzenesulphonate. Same sig and Q."
5 stars to those of you who can name this drug.
"Please dispense ethylmethyl aminoethoxymethyl 4-2chlorophenyldihydro6methylpyridinedicarboxylate monobenzenesulphonate. Same sig and Q."
5 stars to those of you who can name this drug.
Thursday, January 14, 2010
Dr. Drew Debuts the Rx Locker to Help Prescription Drug Abuse Among Teens -- LOS ANGELES, Jan. 7 /PRNewswire/ --
Dr. Drew Debuts the Rx Locker to Help Prescription Drug Abuse Among Teens -- LOS ANGELES, Jan. 7 /PRNewswire/ --
A valiant effort Dr. Drew! At least you are drawing attention to this problem. This Rx locker might deter the casual user, or prevent the hardcore user from stealing YOUR Oxycontin, but this will make as big a dent in the problem as moving PSE products behind the counter did. That is to say, a smallish dent. Obstacles like this just force users to up their game. They will just get guns and walk to their nearest pharmacy and demand oxycodone at gunpoint, like they did last month to the pharmacy down the road. I don't know the answer though, so I commend your concern and effort, Dr. Drew.
A valiant effort Dr. Drew! At least you are drawing attention to this problem. This Rx locker might deter the casual user, or prevent the hardcore user from stealing YOUR Oxycontin, but this will make as big a dent in the problem as moving PSE products behind the counter did. That is to say, a smallish dent. Obstacles like this just force users to up their game. They will just get guns and walk to their nearest pharmacy and demand oxycodone at gunpoint, like they did last month to the pharmacy down the road. I don't know the answer though, so I commend your concern and effort, Dr. Drew.
Friday, January 8, 2010
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