So today I get a call from my high school friend, Bill Flott. He has been in the hospital fighting an infection that could have killed him. He told me he couldn't think of anyone who could relate to what he was going through except me. He knows I've been fighting like crazy for 5 1/2 years trying to beat this LMS cancer. It doesn't matter what I do, it seems the cancer always pops back up. I'm weary. I'm fed up. Why can't it just go away?
Our group has lost several in the past week. Warriors that succumbed to this ugly beast. The dragon they call it. It makes you want to throw up your hands and scream, "WHY BOTHER?"
Then I'm walking blocks to get to the parking garage. The good news is Mayo has constructed a subway level. No, there are no trains to ride in, you have to walk but at least you get to walk in warmth in the winter or in air conditioning in the summer. This gives me a lot of time to think. There are so many people using walkers or wheelchairs. This is the place people go to get fixed. Sometimes it's a last ditch effort to save themselves. Why? Why do people wait until they can't walk or can't breathe before they do something? It has always bugged me.
What I would like to do is this. I'd like to make a smoker not be able to breathe for a day. I'd like for them to walk up the stairs and gasp for breath. I'd like the drug addict to have to sleep under a bridge for a week. I'd like for them to know what it feels like to lose their job, their family, their friends. I'd like for the person who is just getting a hint of dementia to have full blown Alzheimer's for a day. I want people to realize that you cannot stick your head in the sand and pretend it's not going to happen to you. How many more women who refuse to have a mammogram have to die before the denial will be stopped? How many people have to lose all their teeth before the "it won't happen to me" syndrome will keep people from going to the dentist?
Rant over!
Thursday, December 4, 2014
Monday, November 10, 2014
What am I to do?
I'm between a rock and a hard place. What's a person to do?
I drop Chloe off at church on Thursday nights. During her class they also have a really big group in Celebrate Recovery. In this group people are dealing with all kinds of things. Alcoholism, drug addiction, sex addiction, food addiction, codependency, etc. They congregate outside a lot of them smoking cigarettes. Some dressed pretty rough. Guess what? They are trying to get their act together. I applaud them. They have realized they are powerless against their addiction and they are turning to a higher power to help them get out of it.
So what do you do about people who have made some really bad mistakes in their life? What if someone did something so heinous during a black out drunk? What if they have leanings that way and are definitely at a risk to fail? Do you wash your hands of them? Or do you give them the benefit of the doubt and become their friend and be an encouragement to them??
Is this an opportunity as a Christian to show love and acceptance?
I've known many, many people with addictions. So many people. At first you hope for the best and you find yourself trying to help out. Then you realize that this person just keeps on slipping. When do you wash your hands of them? As a friend? As a spouse? As a relative? Or do you do what the Bible says? Forgive them 70 X 7?
THAT is the question!
I drop Chloe off at church on Thursday nights. During her class they also have a really big group in Celebrate Recovery. In this group people are dealing with all kinds of things. Alcoholism, drug addiction, sex addiction, food addiction, codependency, etc. They congregate outside a lot of them smoking cigarettes. Some dressed pretty rough. Guess what? They are trying to get their act together. I applaud them. They have realized they are powerless against their addiction and they are turning to a higher power to help them get out of it.
So what do you do about people who have made some really bad mistakes in their life? What if someone did something so heinous during a black out drunk? What if they have leanings that way and are definitely at a risk to fail? Do you wash your hands of them? Or do you give them the benefit of the doubt and become their friend and be an encouragement to them??
Is this an opportunity as a Christian to show love and acceptance?
I've known many, many people with addictions. So many people. At first you hope for the best and you find yourself trying to help out. Then you realize that this person just keeps on slipping. When do you wash your hands of them? As a friend? As a spouse? As a relative? Or do you do what the Bible says? Forgive them 70 X 7?
THAT is the question!
Monday, October 13, 2014
Laugh or cry?
This post is to ask the question - should I laugh or cry?
I'm driving home and I get behind every single slow person in the world. At least I don't have to go to the bathroom. THAT has happened to me. In that circumstance I would probably cry. Today? I laugh. It's maniacal laughter.
I'm watching the reaction of people to statements I make. Laugh or cry? Laugh!!! You've got to be kidding me! You really didn't make that statement, did you?? That was so obviously passive-aggressive. LAUGH!
Why don't I keep up on current events? CRY!! I don't have the stomach to or the want to or the time to. What do I have the time for? Living. Not fighting with people over liberal or conservative ridiculous politics. It doesn't matter what side you are on, they are all crooks as far as I am concerned.
I'm afraid. Of ebola. Of death camps. Of cartels. Of Cancer. Of ISIS. I'm afraid of sarcasm. When people respond with sarcasm I want to crawl into a hole.
I'm in the process of reprogramming my life. It's hard to do when people around you continue to live life like you don't want to live it anymore. I want to say, "save the act for someone who thinks it is sincere." I also want to say, "don't try to kid a kidder………..I know the drill." Hey, I think that might have been sarcasm………….time to go crawl into a hole.
I'm driving home and I get behind every single slow person in the world. At least I don't have to go to the bathroom. THAT has happened to me. In that circumstance I would probably cry. Today? I laugh. It's maniacal laughter.
I'm watching the reaction of people to statements I make. Laugh or cry? Laugh!!! You've got to be kidding me! You really didn't make that statement, did you?? That was so obviously passive-aggressive. LAUGH!
Why don't I keep up on current events? CRY!! I don't have the stomach to or the want to or the time to. What do I have the time for? Living. Not fighting with people over liberal or conservative ridiculous politics. It doesn't matter what side you are on, they are all crooks as far as I am concerned.
I'm afraid. Of ebola. Of death camps. Of cartels. Of Cancer. Of ISIS. I'm afraid of sarcasm. When people respond with sarcasm I want to crawl into a hole.
I'm in the process of reprogramming my life. It's hard to do when people around you continue to live life like you don't want to live it anymore. I want to say, "save the act for someone who thinks it is sincere." I also want to say, "don't try to kid a kidder………..I know the drill." Hey, I think that might have been sarcasm………….time to go crawl into a hole.
Wednesday, September 3, 2014
How a Cancer patient feels when people pull away…..
I've been fighting cancer for over 5 years. It's interesting when you first get diagnosed how many people are there for you. You get lots of posts on your FB wall and everyone rallies with you. Then time starts ticking and the newness of the disease wears off.
Some people stick with you. Through every post on the next surgery or chemo or ache or pain they have some nice words of encouragement. They seem to be there in spirit. But so, so many probably get weary of the constant battle they hear about and pull away.
I've been surprised at the lack of encouragement I get from so many people who I would have considered friends over the years. I'm not sure why this is but some people drop you like a hot potato.
I'm part of a support group online for people with leiomyosarcoma and recently we had a discussion about this very thing. So many have lost boyfriends, husbands, wives, friends, etc. Mostly because those people could not deal with the constant battle of cancer fighting. We've agreed that people react in different ways. Some of our families live in denial and push for us to be the same as we used to be. Some people simply disappear and don't look back.
Another thing us cancer patients seem to have in common is our direct and sometimes not appreciated communication. When someone hands you a death sentence (or perceived death sentence) something within you snaps. Playing the game of life changes. You are more honest and to the point and that makes people very uncomfortable. Because of that we are often times disliked and hated. This hurts because not only are we dealing with death on a daily basis but then we are dealing with people pushing back trying to get us to go back into our PC box. So you are sick and hated.
Because of my love for psychology I have been trying to figure out why people react to disease the way they do. I guess no matter how you slice it, it is hard subject. Some people pretend it isn't there. I have one friend who I used to talk to all the time and now I never do. When I do talk to her the conversation is always about her. I'm not sure if she can handle what I am going through so she just doesn't mention it.
Also I've had people on FB unfriend me. Peripheral ones. Not that I talk to them much but I notice they are gone. I cannot help but have my feelings hurt. OR when my friends comment on each other's posts and pictures but not mine, it makes me think they have hidden me from their newsfeed. Is it because I am a bother to them? They don't want to hear it? Or they don't want to be confronted with my illness? Or they are just plain sick of it? My online support group have decided that we shouldn't sweat this. If they don't want to be our friend at this point in our lives than we really don't need or want them. We will lean on and towards those who are a constant encouragement to us. We need the positive vibes. We don't need the negatives. We cannot fault these people either because we don't know what is going on in their mind. Everyone deals with cancer and just humans in general in different ways. If they don't act like we think they should then that is our problem, not theirs. The support group has been so good for me because I am able to vent to people who are going through the exact same thing as I am so they understand.
I guess I don't expect everyone to stay on my roller coaster but I would appreciate it if some of my friends would check in from time to time. I would appreciate it if those closest to me would let me try to get better by not exposing me to sickness and a really demanding schedule. I wish the people who have a really hard time with illness would learn from me that very little is needed from your sick friend, just an acknowledgement from time to time. A gift card for gas or groceries would be so appreciated because we are always running to Mayo and spending money we don't have on hotels and deductibles etc.
I guess I understand. Death and disease is not an easy subject but it is also a very lonely and scary place to live. All you want is your old life back. All you want is to be able to live and work and be and do.
Some people stick with you. Through every post on the next surgery or chemo or ache or pain they have some nice words of encouragement. They seem to be there in spirit. But so, so many probably get weary of the constant battle they hear about and pull away.
I've been surprised at the lack of encouragement I get from so many people who I would have considered friends over the years. I'm not sure why this is but some people drop you like a hot potato.
I'm part of a support group online for people with leiomyosarcoma and recently we had a discussion about this very thing. So many have lost boyfriends, husbands, wives, friends, etc. Mostly because those people could not deal with the constant battle of cancer fighting. We've agreed that people react in different ways. Some of our families live in denial and push for us to be the same as we used to be. Some people simply disappear and don't look back.
Another thing us cancer patients seem to have in common is our direct and sometimes not appreciated communication. When someone hands you a death sentence (or perceived death sentence) something within you snaps. Playing the game of life changes. You are more honest and to the point and that makes people very uncomfortable. Because of that we are often times disliked and hated. This hurts because not only are we dealing with death on a daily basis but then we are dealing with people pushing back trying to get us to go back into our PC box. So you are sick and hated.
Because of my love for psychology I have been trying to figure out why people react to disease the way they do. I guess no matter how you slice it, it is hard subject. Some people pretend it isn't there. I have one friend who I used to talk to all the time and now I never do. When I do talk to her the conversation is always about her. I'm not sure if she can handle what I am going through so she just doesn't mention it.
Also I've had people on FB unfriend me. Peripheral ones. Not that I talk to them much but I notice they are gone. I cannot help but have my feelings hurt. OR when my friends comment on each other's posts and pictures but not mine, it makes me think they have hidden me from their newsfeed. Is it because I am a bother to them? They don't want to hear it? Or they don't want to be confronted with my illness? Or they are just plain sick of it? My online support group have decided that we shouldn't sweat this. If they don't want to be our friend at this point in our lives than we really don't need or want them. We will lean on and towards those who are a constant encouragement to us. We need the positive vibes. We don't need the negatives. We cannot fault these people either because we don't know what is going on in their mind. Everyone deals with cancer and just humans in general in different ways. If they don't act like we think they should then that is our problem, not theirs. The support group has been so good for me because I am able to vent to people who are going through the exact same thing as I am so they understand.
I guess I don't expect everyone to stay on my roller coaster but I would appreciate it if some of my friends would check in from time to time. I would appreciate it if those closest to me would let me try to get better by not exposing me to sickness and a really demanding schedule. I wish the people who have a really hard time with illness would learn from me that very little is needed from your sick friend, just an acknowledgement from time to time. A gift card for gas or groceries would be so appreciated because we are always running to Mayo and spending money we don't have on hotels and deductibles etc.
I guess I understand. Death and disease is not an easy subject but it is also a very lonely and scary place to live. All you want is your old life back. All you want is to be able to live and work and be and do.
Thursday, August 21, 2014
PTSD, After vacation blahs, etc.
Don't know why I have been weepy today. It used to be I could figure out what day it was in the month and that would tell me why I was experiencing a lot of emotion. Not today. I don't have those hormonal changes anymore. Today it is as if the bottom has opened up and I am falling.
I guess a lot has happened lately. First a friend who also had leiomyosarcoma died. She was younger than I am and had 3 kids. Two little ones. She lost her battle in just a little over a year from her diagnosis.
Right after that I heard that one of my favorite actors, Robin Williams committed suicide. Like so many, I was mortified that such a talented and young man who seemed to have the world by the tail could end it all. Then I posted something about him on my wall and a friend of mine and I got into a debate or a FB fight over it. That wasn't pleasant.
A couple weeks ago I posted about an aha moment. The debate on my FB page regarding Robin Williams was a part of my aha moment. I had promised myself that I would no longer sit quietly by if someone decides they are going to express their distaste over something I post or impose their wishes on me. That was the first time I forcefully set those boundaries that I promised myself I would. I promised myself that I wouldn't be bullied or apologize for believing something or posting something. I figure if you don't like what I post, then you don't have to read it and you certainly don't have to fight with me over it.
Then Chelsea and I were caravanning over to Omaha to catch a flight to Spokane, Washington to attend the wedding of my sweet and beautiful cousin, Haley Jones. On the way to Omaha we witnessed a freak accident where a tire hit a young man named Andrew Joseph Engle "Joe," aged 39. We saw him get taken out by a renegade tire that had come loose in a construction zone on I80. He died. We were just feet away from him. I was the second car that stopped when we saw it happened.
Then I was driving home from Omaha and a gal from Mayo called and asked me to come up early. I called Jeff, went home, washed clothes, packed and straight up to Mayo we went. I thought I was going to have a cryoablation that very day (yesterday) but it was only an appointment where Jeff and Chloe didn't have to come. The pressure of dropping everything and running up there put undo stress on me. Then I couldn't get anyone to come over and let the dogs out because it was such late notice and nobody seemed to be able to adjust their schedule to let the dogs out. I was stressed over that and came home to 3 piles of diarrhea dog do. So I had to immediately clean that up. Then I realized the kitchen sink was clogged. I tried everything to unclog it. Vinegar and baking soda. Plunger. Draino. Nothing worked. So I called a plumber. He's coming NOW!
Also I am totally broke from vacation. You've probably been there. No money. A week before you get paid. Don't want to put stuff on a charge card. Don't want to take money out of savings. So I took some cans back. Got $11. What did I buy? Pepto Bismol. Why? Because I have had the worst intestinal issues since my surgery back in January.
So I realized I think I am suffering from PSTD. I think witnessing someone get killed in a freak accident just put me over the edge. That and all the little "minnowy" things that eat you alive.
I've got a boat load of work to do around the house. I finally feel pretty good physically but I'm spent emotionally. I have this feeling of giving and giving and giving but never getting. I'm holding up my hand. Stop! Emotionally I cannot take anymore.
I left the wedding Saturday night and didn't say good bye to a lot of my precious family. Those I did say good bye to I said, "I hope to see you again." That is something I have to think about. Living with a life threatening disease is like walking through a mine field. You never know when you are going to step on a mine. When Joe was in Sturgis riding around with his friends, he didn't know he would never make it back to Philly. He would be the victim of a freak accident. Anyone of us could be.
I've got that "after vacation let down." You know? You've been enjoying your family. First the Black Hills, then Couer d'Alene, Idaho. Lucky, lucky me!! How much of my bucket list have I done? Then you go home and have to do housework, laundry, dishes, etc. Suddenly you have to get up at precisely 6:35 am to drive your daughter to school. Hey, wait!! I was having fun. When did reality set in?
Well, I guess that's the end of my vent. I'm actually feeling better for having put it on paper.
On a positive note? I picked some tomatoes and roasted them with olive oil, balsamic vinegar, basil and garlic. I'll boil some noodles and that will be the "sauce." Can't get any fresher than that. I'm thinner than I have been in a LONG time so there's that.
I've got great kids and grandkids. They are the biggest blessing in my life.
I guess a lot has happened lately. First a friend who also had leiomyosarcoma died. She was younger than I am and had 3 kids. Two little ones. She lost her battle in just a little over a year from her diagnosis.
Right after that I heard that one of my favorite actors, Robin Williams committed suicide. Like so many, I was mortified that such a talented and young man who seemed to have the world by the tail could end it all. Then I posted something about him on my wall and a friend of mine and I got into a debate or a FB fight over it. That wasn't pleasant.
A couple weeks ago I posted about an aha moment. The debate on my FB page regarding Robin Williams was a part of my aha moment. I had promised myself that I would no longer sit quietly by if someone decides they are going to express their distaste over something I post or impose their wishes on me. That was the first time I forcefully set those boundaries that I promised myself I would. I promised myself that I wouldn't be bullied or apologize for believing something or posting something. I figure if you don't like what I post, then you don't have to read it and you certainly don't have to fight with me over it.
Then Chelsea and I were caravanning over to Omaha to catch a flight to Spokane, Washington to attend the wedding of my sweet and beautiful cousin, Haley Jones. On the way to Omaha we witnessed a freak accident where a tire hit a young man named Andrew Joseph Engle "Joe," aged 39. We saw him get taken out by a renegade tire that had come loose in a construction zone on I80. He died. We were just feet away from him. I was the second car that stopped when we saw it happened.
Then I was driving home from Omaha and a gal from Mayo called and asked me to come up early. I called Jeff, went home, washed clothes, packed and straight up to Mayo we went. I thought I was going to have a cryoablation that very day (yesterday) but it was only an appointment where Jeff and Chloe didn't have to come. The pressure of dropping everything and running up there put undo stress on me. Then I couldn't get anyone to come over and let the dogs out because it was such late notice and nobody seemed to be able to adjust their schedule to let the dogs out. I was stressed over that and came home to 3 piles of diarrhea dog do. So I had to immediately clean that up. Then I realized the kitchen sink was clogged. I tried everything to unclog it. Vinegar and baking soda. Plunger. Draino. Nothing worked. So I called a plumber. He's coming NOW!
Also I am totally broke from vacation. You've probably been there. No money. A week before you get paid. Don't want to put stuff on a charge card. Don't want to take money out of savings. So I took some cans back. Got $11. What did I buy? Pepto Bismol. Why? Because I have had the worst intestinal issues since my surgery back in January.
So I realized I think I am suffering from PSTD. I think witnessing someone get killed in a freak accident just put me over the edge. That and all the little "minnowy" things that eat you alive.
I've got a boat load of work to do around the house. I finally feel pretty good physically but I'm spent emotionally. I have this feeling of giving and giving and giving but never getting. I'm holding up my hand. Stop! Emotionally I cannot take anymore.
I left the wedding Saturday night and didn't say good bye to a lot of my precious family. Those I did say good bye to I said, "I hope to see you again." That is something I have to think about. Living with a life threatening disease is like walking through a mine field. You never know when you are going to step on a mine. When Joe was in Sturgis riding around with his friends, he didn't know he would never make it back to Philly. He would be the victim of a freak accident. Anyone of us could be.
I've got that "after vacation let down." You know? You've been enjoying your family. First the Black Hills, then Couer d'Alene, Idaho. Lucky, lucky me!! How much of my bucket list have I done? Then you go home and have to do housework, laundry, dishes, etc. Suddenly you have to get up at precisely 6:35 am to drive your daughter to school. Hey, wait!! I was having fun. When did reality set in?
Well, I guess that's the end of my vent. I'm actually feeling better for having put it on paper.
On a positive note? I picked some tomatoes and roasted them with olive oil, balsamic vinegar, basil and garlic. I'll boil some noodles and that will be the "sauce." Can't get any fresher than that. I'm thinner than I have been in a LONG time so there's that.
I've got great kids and grandkids. They are the biggest blessing in my life.
Tuesday, August 5, 2014
Breaking Free
A few days ago I had an a-ha moment. It was a moment when I unlocked the shackles that have bound me for almost my entire life.
I was raised in a Christian home. I grew up and my children went to a Christian school. I was part owner of a Christian retail store. I know all the "right" things to do and say to make you accepted by this group of people. The denomination I grew up in was very strict in their list of dos and don'ts.
By nature I am rebellious. If someone tells me I cannot do something, I usually try to do it just because they told me not to. I wasn't very good at keeping all those rules and regulations as a teenager. For one, it didn't make me "cool" which is something I felt I had to be as a teenager. I was always repenting of my sins and feeling guilty about my indiscretions.
Fast forward 4 decades when I broke free last week. Something snapped in me. I have watched as people who claim to be real Christians lie and rationalize and excuse and judge and manipulate. I snapped. I thought to myself, "if that is what it is to be the kind of Christian that everyone wants me to be, then I say NO, I won't be that way." I can't be that way.
I am thankful for the church I found. Lutheran Church of Hope. These people do not make me feel that way and I will continue to be a member at a church where I feel the people are authentic and don't march to a list of dos and don'ts. Don't get me wrong. There are some definite taboos even within this church but ones I am comfortable with.
And there is the whole political thing. I've decided I am a moderate. I'm registered independent and I cannot jump on any bandwagon and yell and scream to the top of my lungs about this or that. I decide how I feel issue by issue. Either way if I told you where I stand, I would offend someone and have a fight on my hand. So I choose to be quiet about it. When they say don't argue about religion or politics it is so apparent why. People get super worked up if you don't agree with them. I decided last week that I wasn't going to believe something just because I was raised to be that way or I was coerced by over zealous friends. (And believe me if you saw who my FB friends are you would realize that I have friends from all over the spectrum. There is no way I could make anyone happy with my beliefs so I'll just keep my opinions to myself and vote according to my convictions.)
Mostly my a-ha moment came from within. If someone starts to lecture or tries to guilt me or one of my family members, I will shut them down. This is a new boundary in my life. I have walked on eggshells around certain people and have tried to temper my opinions around them so I would not offend them. Well, I am entitled to my opinions, too. I don't have to watch what I say in order to keep the peace. Hey. If they can live their lives and have their opinions and speak them as truth, then I can live my life based on my truths and I have the freedom to believe what I want to believe and to speak and do what I believe. Does that make sense?
All this to say that I am marching to my own drum. Sorry if I don't agree with you. We are all entitled to our opinion. I am going to try to march with love and happiness and strength. I will appreciate people speaking words that are uplifting and supportive. I will not appreciate nor will I accept words of shame and guilt and manipulation. I don't live that way anymore. If it gets uncomfortable then I guess I will have to leave. Better to walk away then to have a fight.
I was raised in a Christian home. I grew up and my children went to a Christian school. I was part owner of a Christian retail store. I know all the "right" things to do and say to make you accepted by this group of people. The denomination I grew up in was very strict in their list of dos and don'ts.
By nature I am rebellious. If someone tells me I cannot do something, I usually try to do it just because they told me not to. I wasn't very good at keeping all those rules and regulations as a teenager. For one, it didn't make me "cool" which is something I felt I had to be as a teenager. I was always repenting of my sins and feeling guilty about my indiscretions.
Fast forward 4 decades when I broke free last week. Something snapped in me. I have watched as people who claim to be real Christians lie and rationalize and excuse and judge and manipulate. I snapped. I thought to myself, "if that is what it is to be the kind of Christian that everyone wants me to be, then I say NO, I won't be that way." I can't be that way.
I am thankful for the church I found. Lutheran Church of Hope. These people do not make me feel that way and I will continue to be a member at a church where I feel the people are authentic and don't march to a list of dos and don'ts. Don't get me wrong. There are some definite taboos even within this church but ones I am comfortable with.
And there is the whole political thing. I've decided I am a moderate. I'm registered independent and I cannot jump on any bandwagon and yell and scream to the top of my lungs about this or that. I decide how I feel issue by issue. Either way if I told you where I stand, I would offend someone and have a fight on my hand. So I choose to be quiet about it. When they say don't argue about religion or politics it is so apparent why. People get super worked up if you don't agree with them. I decided last week that I wasn't going to believe something just because I was raised to be that way or I was coerced by over zealous friends. (And believe me if you saw who my FB friends are you would realize that I have friends from all over the spectrum. There is no way I could make anyone happy with my beliefs so I'll just keep my opinions to myself and vote according to my convictions.)
Mostly my a-ha moment came from within. If someone starts to lecture or tries to guilt me or one of my family members, I will shut them down. This is a new boundary in my life. I have walked on eggshells around certain people and have tried to temper my opinions around them so I would not offend them. Well, I am entitled to my opinions, too. I don't have to watch what I say in order to keep the peace. Hey. If they can live their lives and have their opinions and speak them as truth, then I can live my life based on my truths and I have the freedom to believe what I want to believe and to speak and do what I believe. Does that make sense?
All this to say that I am marching to my own drum. Sorry if I don't agree with you. We are all entitled to our opinion. I am going to try to march with love and happiness and strength. I will appreciate people speaking words that are uplifting and supportive. I will not appreciate nor will I accept words of shame and guilt and manipulation. I don't live that way anymore. If it gets uncomfortable then I guess I will have to leave. Better to walk away then to have a fight.
Saturday, June 7, 2014
Sad, depressed and stir crazy!
On Monday, June 9, 2014 I will head up to Mayo Clinic in Rochester for my six week check up with Dr. Francis Nichols, the head of Thoracic surgery. This could be the last follow up of all my surgeries this year.
June. This all started in January. I knew it was going to be a long haul. Our plan was laid out in November of last year. I had an abdominal tumor which was causing much pain, intestinal blockage and loss of blood which caused anemia. Also a tumor in my lower left lung and one in my upper right lung. A new tumor was found in my right kidney. They were worried the abdominal one was a recurrence on my reconstructed ureter from January, 2011.
All or nothing is basically what they told me. Why should they go after one tumor when I had others ready to cause problems. Seemed like good advice.
So I had the first surgery in January where they removed 1 1/2 feet of bowel with a baseball sized tumor. Side effect presented itself as irritable bowel syndrome and it was not fun. The good news I started losing some weight and I had some to lose so that made me happy.
Then in February I had the kidney ablation. An interesting fact about this surgery is that in the scheme of things it was the "easiest" procedure, but how I felt?? Not good. I had a cold during it and the recovery just made me feel lousy. I bounced back pretty fast but right after I felt a sense that I could not go under anesthesia again. Then I was supposed to go right back in and do the first of 2 lung surgeries. But instead, I was sick. Flu first. Diarrhea. I called the doc and told him I was in no shape to do the surgery. Then we rescheduled and the next thing I had was a sinus infection so we rescheduled again. The whole month of March I was sick. My friend, Traci Hart commented on FB that I got the award for being sick all the time. She was right. I was sick ALL the time.
Then in April I had a tumor removed from my lower left lung. The weirdest side effect was I kind of lost my voice. I talked with a rasp. A little over a week later I went in for another lung surgery, this time to remove a tumor from my upper right lobe. Instead of just removing the tumor, they took the entire lobe. I have had a very difficult time recovering from this last surgery. I'm dependent on oxygen a lot of the time. I'm winded and cannot do anything. My raspy voice got worse and it wears me out to talk. A load of laundry about wiped me out. I see 100 things that need to be done and I cannot do them. I know I am done with the surgeries but I really cannot heal quickly enough.
So here I am a week into June. That's officially 6 months I have been either in surgery, recovering from surgery, sick or just plain tired. I found a drug that made it all bearable but apparently the prescription was to last me 20 days but I had it done in 12. The prescription said "take 1-2 every 4 hours." I took 2 every 4 hours and had them done 8 days early. So the doc prescribed me something else that really makes me feel uncomfortable in my own skin. I am still in pain so I am trying to supplement with some tylenol or ibuprofen. I can refill the other prescription again tomorrow and you can be sure I'll only take 1 as needed so I never run out until I am ok.
The littlest thing wears me out and I suddenly have great empathy for those people who are dying a slow death. You cannot imagine how it feels to have the you that you know gone. The things you took for granted are not only not easy, but in some ways impossible. I watch others through Facebook go on with their lives. I see pictures of people out to dinner. People at ball games. Gardens and flowers and birds and parks and parades and all I am is a voyeur. I want to DO. I want to be a part of the life I used to live.
So I went to lunch with a couple of old friends the other day and while talking I said it out loud. I've been out of commission for 6 months! Later that day I realized, I am depressed and sad. I cannot help but feel sorry for myself because on top of that it's been 5 years. Five years of drugs and surgeries and more drugs and procedures. I'm tired.
So the goal was to eradicate the cancer completely and my hope is it is over!!! I'm hoping for a miracle!! I appreciate prayers.
So when I go see Dr. Nichols I am hoping for a good report. I also go and see my oncologist, Dr. Okuno (actually his associate.) We will see if all is good.
I think I've drug everyone I know through my cancer journey. I didn't think I would be such a fighter and would be able to beat this thing for as long as i have. I would be so happy to be able to post on Facebook pictures of me and my family doing fun things. Actually, I shouldn't complain because inbetween the really awful stuff, I have been able to do a lot of really fun and exciting things and I am very thankful for that. I am hoping this is just a temporary set back and I can start doing things again. Things like running around and straightening up my house. Tend to my garden, water my flowers, sweep around the pool, wash off the deck. That's all I want to do!!! Normal stuff!!
Thanks for listening and please send some prayers while I'm at Mayo next week.
June. This all started in January. I knew it was going to be a long haul. Our plan was laid out in November of last year. I had an abdominal tumor which was causing much pain, intestinal blockage and loss of blood which caused anemia. Also a tumor in my lower left lung and one in my upper right lung. A new tumor was found in my right kidney. They were worried the abdominal one was a recurrence on my reconstructed ureter from January, 2011.
All or nothing is basically what they told me. Why should they go after one tumor when I had others ready to cause problems. Seemed like good advice.
So I had the first surgery in January where they removed 1 1/2 feet of bowel with a baseball sized tumor. Side effect presented itself as irritable bowel syndrome and it was not fun. The good news I started losing some weight and I had some to lose so that made me happy.
Then in February I had the kidney ablation. An interesting fact about this surgery is that in the scheme of things it was the "easiest" procedure, but how I felt?? Not good. I had a cold during it and the recovery just made me feel lousy. I bounced back pretty fast but right after I felt a sense that I could not go under anesthesia again. Then I was supposed to go right back in and do the first of 2 lung surgeries. But instead, I was sick. Flu first. Diarrhea. I called the doc and told him I was in no shape to do the surgery. Then we rescheduled and the next thing I had was a sinus infection so we rescheduled again. The whole month of March I was sick. My friend, Traci Hart commented on FB that I got the award for being sick all the time. She was right. I was sick ALL the time.
Then in April I had a tumor removed from my lower left lung. The weirdest side effect was I kind of lost my voice. I talked with a rasp. A little over a week later I went in for another lung surgery, this time to remove a tumor from my upper right lobe. Instead of just removing the tumor, they took the entire lobe. I have had a very difficult time recovering from this last surgery. I'm dependent on oxygen a lot of the time. I'm winded and cannot do anything. My raspy voice got worse and it wears me out to talk. A load of laundry about wiped me out. I see 100 things that need to be done and I cannot do them. I know I am done with the surgeries but I really cannot heal quickly enough.
So here I am a week into June. That's officially 6 months I have been either in surgery, recovering from surgery, sick or just plain tired. I found a drug that made it all bearable but apparently the prescription was to last me 20 days but I had it done in 12. The prescription said "take 1-2 every 4 hours." I took 2 every 4 hours and had them done 8 days early. So the doc prescribed me something else that really makes me feel uncomfortable in my own skin. I am still in pain so I am trying to supplement with some tylenol or ibuprofen. I can refill the other prescription again tomorrow and you can be sure I'll only take 1 as needed so I never run out until I am ok.
The littlest thing wears me out and I suddenly have great empathy for those people who are dying a slow death. You cannot imagine how it feels to have the you that you know gone. The things you took for granted are not only not easy, but in some ways impossible. I watch others through Facebook go on with their lives. I see pictures of people out to dinner. People at ball games. Gardens and flowers and birds and parks and parades and all I am is a voyeur. I want to DO. I want to be a part of the life I used to live.
So I went to lunch with a couple of old friends the other day and while talking I said it out loud. I've been out of commission for 6 months! Later that day I realized, I am depressed and sad. I cannot help but feel sorry for myself because on top of that it's been 5 years. Five years of drugs and surgeries and more drugs and procedures. I'm tired.
So the goal was to eradicate the cancer completely and my hope is it is over!!! I'm hoping for a miracle!! I appreciate prayers.
So when I go see Dr. Nichols I am hoping for a good report. I also go and see my oncologist, Dr. Okuno (actually his associate.) We will see if all is good.
I think I've drug everyone I know through my cancer journey. I didn't think I would be such a fighter and would be able to beat this thing for as long as i have. I would be so happy to be able to post on Facebook pictures of me and my family doing fun things. Actually, I shouldn't complain because inbetween the really awful stuff, I have been able to do a lot of really fun and exciting things and I am very thankful for that. I am hoping this is just a temporary set back and I can start doing things again. Things like running around and straightening up my house. Tend to my garden, water my flowers, sweep around the pool, wash off the deck. That's all I want to do!!! Normal stuff!!
Thanks for listening and please send some prayers while I'm at Mayo next week.
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