Let me try this again! Michael didn't want anything posted in the group about how he has been feeling until after his party, he wanted to have fun and enjoy the day with out a cloud hanging over his head or people "worrying" about him and he didn't want anyone not to come because of "cancer". Though yesterday was a day of recovery for him as the days after any big event or activity is, he was still very happy with how his party went, despite how he felt he said several times "I have a lot of good people in my life" , "I had a lot of fun" and "Thank you for doing that for me". For that I want to thank everyone who took time out to come and celebrate and laugh with us, it means more to him then just a ball game or birthday party! He has been struggling emotionally and physically the last few weeks. He has been processing and coming to terms with his limitation both physically and mentally, he has kind or withdrew in order to process this new stage in his our life. The appointment with the quaky neurologist really knocked him down, but we do have a new appointment, they called this morning with a new doctor who actually has requested we bring the mri with us, so that is a positive sign, the other doctor didn't even look at it! Friday I left work a little early in order to take him in to Dr. Hadley's office to get an iv of nausea meds and nerve meds, as we know that our mind can greatly effect our body and we have been unsure of what has been causing his sickness the last few weeks. He has not been able to eat with out getting sick, he has been drinking a lot of Gatorade and eating a lot of crackers. He has been dealing with an immense amount of nausea and upset stomach, he has been dizzy quite often, which could be from not being able to eat much, his legs have been weakening even though he is doing well at staying as active as he can. When we were in wal-mart on Thursday buying the food for the party his knees buckled and the only that saved him from hitting the floor was the cart. On Saturday he refused to eat anything until the party as he was afraid he would get sick or start feeling bad and be unable to enjoy himself and he wanted to enjoy the day to fullest. He did eat at the party, he snacked and ate 3 wings, he didn't try any of his cake until Sunday afternoon. Because he waiting to eat until the party he also had to wait until the party to take his chemo pills. This made him a little anxious as he does not know from one day to the next how his body is going to react to them, there are days that they don't bother him at all and days that he is in bed all day. This is usually his good week, the last week of the cycle when he is feeling his best before it all starts over again, he has iv chemo Friday and then will spend the next week taking his biggest doses of chemo pills. This sends him in to about 20 days of feeling really bad, then the last 8 days he is usually adjusted and feeling good before starting again, he lives for that one week, but since I am writing this you know I am home and he this is not the case, he is feeling very bad, dizzy, weak and sick to his stomach something awful, we know it will pass but it is frustrating as hell! It has been many days recently that he has been in bed a lot or on the couch laying down and watching tv. The biggest frustration for him however over the last few weeks has been his feet, they are numb all the time and hurt, he has been having trouble driving because he can not feel pedals and even walking a lot. This I feel is adding to his other symptoms because he is not able to be as active as he has been and I believe this is effecting his over all health. The frustrating thing for me in all of this is it is not the "cancer" per say making him have all these frustrating problems is the poison, the medications that he takes to keep the cancer from killing him. Until the last few weeks the lowered doses of chemo he has been on since his thanksgiving hospitalization have been doing better for him. His blood counts are still responding well to the new doses which is a blessing. His body was doing a lot better also until recently. His body is tired and though he is doing better in many aspects with the new chemo doses which we are so thankful for, his body is nonetheless tired and tired of being abused by all these drugs. We are confident there will be a day when many of problems he faces day to day will be a distant memory and we know that the realization that some of them will be a constant reminder of what he has been though is. We were told many months ago that the problems with his legs and feet and even hands (though his hands luckily are not giving him trouble thankfully) were a possibility and irreversible we hoped that he would have to deal with it. Our options are to stop chemo to avoid further damage to his legs and feet or continue and possibly have worse effects. These effects are life long effects, not just "while in treatment" effects. We have talked about these options for the last few weeks and HE has decided, because ultimately these are his decisions, I am just a support, to continue with treatment. If we are to stop treatment at this time we don't know what may happen, his cancer may stay inactive or it may not, we do know the chances of it becoming active and even growing or spreading are much greater if he don't finish treatment. He feels and I agree that quitting is not an option, he is responding well to treatment, the treatment it's self is reeking havoc on his body, but it appears to be doing it's job on the cancer. We are still unsure if the issues with his memory and cognitive abilities are long term or short term and hope to get answers on that soon. His fear is that he will not be able to work again and he worries that kids and I will suffer, we will not, we are doing well and will continue to do well. He also knows that if he is not here we will be doing worse in many ways. He is going to be here and we are going to get through each obstacle that is put in front of us. He is good at pretending everything is fine even when it is not and those of us who are very close to him know this, @janet and I are good at calling his bullshit and will continue to do so and make sure he is taken care of and everyone else can help by not doing so and letting him feel normal and seen as more than cancer and in turn helping him overcome these obstacles. Why is this update important if I don't want you to do anything, the answer is because this our journey and we want the truth of this disease out there, it may help someone else or it may help awareness. The life of a cancer patient and the people who love them is much more complicated then meets the eye and takes a lot more planning, a party is not just a party, a symptom is not just a symptom, normal is different every day, but surviving is the goal for each person I know that is having this same struggle. I have a friend and her daughter that I love dearly and I know they are struggling with some of these same issues, and I know that they look at Michael and wonder how he looks so good and how he is doing so well, I want you know my friend you are not alone, what you are going through is normal and he goes through it as well. Anyone else who may read this, you are not alone! Life is hard, but not impossible, don't give up! You are either fighting or your dying! Love all of you, you each are a part of this journey and each of you make it possible!!!
Happy Days
Monday, April 2, 2012
Saturday, March 17, 2012
If it is what it is then make it good!
Several times over the last few months I have wanted to blog, I just don't anymore because I get to much back lash for sharing my feelings and life experience. I was thinking about this today and don't understand why it was OK for me live some of the things I have in my life, but not OK for me to talk about them or to have the people who contributed or watch read them. I mean if I can survive it then you can own it and love me for being able to talk about it and move past it. The past is not the present or future it is simply the things that allow us become the present and the future, good or bad!
I love my mom dearly and anyone who knows me knows that, but I can't deny my childhood and I will leave it at that.
Nothing I particularly want to blog about early this am, I am just unable to sleep and tired of being afraid of my own blog, life is about choices and I will not be offended if anyone chooses not to read my random spouts of self therapy.
Michael is doing OK, not horrible, not great, but OK. We are still waiting for some test to be done at the end of the month or beginning of next. The cancer seems to still be behaving however it seems there may be come serious effects going on from the treatment to get and keep him there and those effects are really taking a toll on him mentally and my myself as well. It is hard to see someone you love so much struggle, it is equally hard to not be able to help or offer a solution. There is more I could say about cancer, medications and health over all, but if you are someone we want to share that with and are on facebook then you know where to find that information, if you are not on facebook and fit in to that category you can send me an email at sthomas4803@gmail.com and I can email you those updates.
We both have a lot to celebrate in our lives as well and have gotten to a point that we are more able to focus on moving forward and putting our energy in on things and people who deserve that energy and are positive in our lives.
Since we have decided to live our life and go on as we know everything will be OK instead of focusing on what could go wrong or might happen or the people who wanted to pull us down, well our lives have greatly improved. The quality of life for my family as whole is much better, we have a car we can depend on, a house to rent that we feel good about and our landlord is wonderful and a saint compared to what we were dealing with.
We are rebuilding and living in the moment at the same time, we enjoy life a lot more in the last few months, we no longer feel judged and less then other people. We are no longer allowing people to make us feel like we are not deserving or smart or capable because we are and the best way to give those people the finger is to show the world that we can and will get through this intact despite efforts to keep us down. The best way to fight the ignorance and drama is to eliminate it and it only took us 31 years to figure that out.
In that process we have reestablished relationships that we lost and made new wonderful ones and that is joyous!
We have found our laughter again, the kind of joyful loving laughter, not sleep deprived just getting through laughter.
With 2 funerals and reflection this week Mike and I have both had our moments, but we are working though them. I am glad I got to spend some quality time with my Uncle Ray before he passed on Sunday, but I am regretting all the time I didn't get to spend with him. Losing him has made me relive the feelings and fears I had and have about losing Michael. They have also made me want to spend more time my grandpa, Ralph means the world to me and not sure that he knows just what he means to me. He has been my father, my grandpa, my male role model and was the only man in my life that ever made me feel wanted and loved besides my husband. I enjoyed greatly having breakfast with him and laughing before Uncle Ray's funeral that morning has replayed over and over in my head since. I am not good at being there when I know I should be because I don't know what to do. My aunt Lisa is so good at taking care of Ma and Pa and I am so thankful they have her, I want to be there also, but I just don't feel I fit in to that role and I want to, if you read this Aunt Lisa and Grandma I love you all and I would be honored if you would give me some direction is what I can do to help out.
I think we have settled in to our new lives well, the kids are doing great and seem so much happier and less stressed out! I love seeing them settle back in to life and not worrying so much. Michael and the kids are closer then they ever have been before or after cancer, they spend a lot of time together and even tonight, Meredith was feeling bad and she wanted daddy to take her to immediate care, it made me sad and glad at the same time. She has strep throat but she is fine, been sleeping since she got back, took her anti biotic's and Tylenol. I am sure she will be feeling better tomorrow.
There are things I could complain about tonight, but I chose to live for the things that make me happy! I have always taught the kids that life is about choices so it is time that I take my own advice. I have been doing that and I am much better for it! Also things seem to be just working better this way.
Cherish what you have no matter how hard things get!
I love my mom dearly and anyone who knows me knows that, but I can't deny my childhood and I will leave it at that.
Nothing I particularly want to blog about early this am, I am just unable to sleep and tired of being afraid of my own blog, life is about choices and I will not be offended if anyone chooses not to read my random spouts of self therapy.
Michael is doing OK, not horrible, not great, but OK. We are still waiting for some test to be done at the end of the month or beginning of next. The cancer seems to still be behaving however it seems there may be come serious effects going on from the treatment to get and keep him there and those effects are really taking a toll on him mentally and my myself as well. It is hard to see someone you love so much struggle, it is equally hard to not be able to help or offer a solution. There is more I could say about cancer, medications and health over all, but if you are someone we want to share that with and are on facebook then you know where to find that information, if you are not on facebook and fit in to that category you can send me an email at sthomas4803@gmail.com and I can email you those updates.
We both have a lot to celebrate in our lives as well and have gotten to a point that we are more able to focus on moving forward and putting our energy in on things and people who deserve that energy and are positive in our lives.
Since we have decided to live our life and go on as we know everything will be OK instead of focusing on what could go wrong or might happen or the people who wanted to pull us down, well our lives have greatly improved. The quality of life for my family as whole is much better, we have a car we can depend on, a house to rent that we feel good about and our landlord is wonderful and a saint compared to what we were dealing with.
We are rebuilding and living in the moment at the same time, we enjoy life a lot more in the last few months, we no longer feel judged and less then other people. We are no longer allowing people to make us feel like we are not deserving or smart or capable because we are and the best way to give those people the finger is to show the world that we can and will get through this intact despite efforts to keep us down. The best way to fight the ignorance and drama is to eliminate it and it only took us 31 years to figure that out.
In that process we have reestablished relationships that we lost and made new wonderful ones and that is joyous!
We have found our laughter again, the kind of joyful loving laughter, not sleep deprived just getting through laughter.
With 2 funerals and reflection this week Mike and I have both had our moments, but we are working though them. I am glad I got to spend some quality time with my Uncle Ray before he passed on Sunday, but I am regretting all the time I didn't get to spend with him. Losing him has made me relive the feelings and fears I had and have about losing Michael. They have also made me want to spend more time my grandpa, Ralph means the world to me and not sure that he knows just what he means to me. He has been my father, my grandpa, my male role model and was the only man in my life that ever made me feel wanted and loved besides my husband. I enjoyed greatly having breakfast with him and laughing before Uncle Ray's funeral that morning has replayed over and over in my head since. I am not good at being there when I know I should be because I don't know what to do. My aunt Lisa is so good at taking care of Ma and Pa and I am so thankful they have her, I want to be there also, but I just don't feel I fit in to that role and I want to, if you read this Aunt Lisa and Grandma I love you all and I would be honored if you would give me some direction is what I can do to help out.
I think we have settled in to our new lives well, the kids are doing great and seem so much happier and less stressed out! I love seeing them settle back in to life and not worrying so much. Michael and the kids are closer then they ever have been before or after cancer, they spend a lot of time together and even tonight, Meredith was feeling bad and she wanted daddy to take her to immediate care, it made me sad and glad at the same time. She has strep throat but she is fine, been sleeping since she got back, took her anti biotic's and Tylenol. I am sure she will be feeling better tomorrow.
There are things I could complain about tonight, but I chose to live for the things that make me happy! I have always taught the kids that life is about choices so it is time that I take my own advice. I have been doing that and I am much better for it! Also things seem to be just working better this way.
Cherish what you have no matter how hard things get!
Friday, March 16, 2012
A poem I wrote a while back
I want to fly high above, above the sadness, violence, sickness and conditional love. Truly free, no more trials to test my time.
Joy to feel never having to say good bye, to be a vision of a song that is sang,
A tune of sweet untarnished melody flowing along the waves to drown out the yin and enhance our inner yang.
Notes of solace spread to my inner destiny, if this could be reality instead of a far fetched fantasy
I want to soar the open mind, the sky of true, experience the spirit of peace defined.
Seeing the loss of sadness in my loved one’s eyes, feel a touch deeper than skin a touch that never has to end.
Forever blue doesn’t flatter my soul, I prefer a sunny yellow shade of me, one that can shine through to absorb the tears of sorrow and never ending pain I see.
Imagine a day, just one that despair had no gain. Insane the thought of a joyous rain
I want to glide through the one day at a time to zen that is not only mine.
A calm to be experienced, felt, instead of talked about.
The storms not even a memory, able to trust and not doubt.
The emotional tornado never happened, never to see the whirling roles I now play;
My air is free from all unbalanced misery if just for one day.
I close my eyes to feel, enjoy the warmth of senses not the darkness for where to hide.
If it was only possible to really get off this, long treacherous ride!
Sunday, November 13, 2011
I don't wanna grow up, but if I did......
I remember being a child, first a toddler wanting to be big enough to get a big girl cup and wear big girl panties, than being a young girl who wanted to wear make up and have boys like me and well, I already had the boobs.Than there was adolescence, you wanted to be a cool teenager so bad and get to drive a car, or at least ride in a friends car, freedom was what we all wanted at that age, room to grow and be who we knew we were destine to be. Sex fun and gossip was what it was about. Then came young adult hood, late teens and early twenties, but not worry by this time you know everything there is to know about life and the problem is just that no one understand you! Problems then was where to go and hang out, and who was sleeping with who and who was in or out that week, my life was ruined by things like a girlfriend talking bad about you or dating a boy you liked. A simple dirty look or eye roll could just fuck up your whole day. The ultimate problem was people who didn't like you always starting trouble, calling you names, and judging you unfairly.
Well evidently I am a grown up now, ultimately that happened really fast over the last year and even though that last part is kind of still the same, the part about people not liking me and judging me unfairly, the rest has drastically changed and I would love for something like a spat with a girl friend to be my BIGGEST troubles and to be what kept me up at night, like this night when I have work tomorrow and need to be resting.
Things are not that simple anymore, back then it seemed like such a heavy burden, but now it seems like a vacation and even a little fun. I would trade "Brainwashing wife" "Bad Mother" or "Broke" FOR "fatty fatty" or "Bo Bo" or "Bubbles" any day. Those names may have hurt my feelings, but the ones I get called these days hurt my soul and my family. That though it not even a real problem, just petty bullshit.
Now grown up problems keep me up at night, like Cancer, who thought that at my age that would be such a common factor in a my life, my blog and my strength. Just in the last few weeks, my husband continues his fight, a friend I love has been struggling with the loss of her husband, another friend I adore and love was diagnosed and a new friend, but one with just as much of a connection to my life found out her husbands cancer is back. The common factor is all these stories is Cancer, something that was someone else's problem and not mine until a year ago and now it is my problem on many different levels, as a care taker, a wife, a mother and I am also trying to define my role as a friend and supporter to those who need me as much as I need them. I have found that all my years of "being the friend" and listening I have become good at being support for those who allow me to be. I have been the person in my family that often is the problem solver, the helper, the voice of logic, but I am just now branching out more to people who really need me. I had to also take on a role that was very difficult for me and still feels awkward, I have had to be the vulnerable one who needs help and has had to learn how to accept it. But because of people I have met that have given me that support it makes me very aware and willing to pay it forward, i have learned from great friends like Carin, Tami, Mary and Barb how to be a good support in this community on these journey's and I embrace it and I get to help others, make friends and there fore allow other to pay it forward by learning from what I have been taught. It may not make sense to you, but it makes perfect sense to me.
My problems now are harder even though my life and child hood was no easy road because now I am the adult, the grown up, the decision maker, the figurer outer, the voice of reason, the one that is looked up to by those innocent people I created with love. I sometimes sit and think, I sometimes drift off in my own world and get lost, but one thing I drift off to lately is trying to figure out when I became the adult and if I am a good one or if my kids will look back at this time in our lives and be scared and feel I let them down. I feel very let down by my parents as an adult just as I did as a child and I don't want that.
This journal entry was inspired by my chldren, i am amazed at the people they are becoming and how they still like to spend time with me though I would expect them to be pushing me away. I talk to them often about serious and silly things. When I hear my daughter come home ranting about her day and school and troubles ( you know little girls) it takes me back and makes me laugh, I try not to take it to serious, but let her talk and share my experiences with her. Why did I want to grow up so fast? I wish I had not had to, I wish I had been allowed to be a child. Through talking to the kids though it took me back to the days of ole when the boy you like liking another girl was just the end of the world. I long for those days because this version of being a grown up that I got sucks. I make the best of it, don't get me wrong, it sucks, but we make it suck with style, I just wish I didn't have to try so hard all the time.
I have stressed to my kids to enjoy their childhood and to embrace it, I don't want them to grow up to fast and I don't care who makes fun of my son for playing with Barbies, better then kissing your daughter right!
I think though I have done a better job on my kids because during this conversation that inspired this post I tell Meredith that she is growing up so fast and before long she will be driving and dating and so on and she said to me that she didn't want to grow up, she wanted to stay a kid. At her age I wanted to grow a year a week.
This is another ranting post that don't make much sense I suppose, but the moral to the story is don't grow up to fast and even when you do, take time out to be a kid it will keep you sane.
Hugs and Kisses to you all,
Stefanie aka Fluffy
Well evidently I am a grown up now, ultimately that happened really fast over the last year and even though that last part is kind of still the same, the part about people not liking me and judging me unfairly, the rest has drastically changed and I would love for something like a spat with a girl friend to be my BIGGEST troubles and to be what kept me up at night, like this night when I have work tomorrow and need to be resting.
Things are not that simple anymore, back then it seemed like such a heavy burden, but now it seems like a vacation and even a little fun. I would trade "Brainwashing wife" "Bad Mother" or "Broke" FOR "fatty fatty" or "Bo Bo" or "Bubbles" any day. Those names may have hurt my feelings, but the ones I get called these days hurt my soul and my family. That though it not even a real problem, just petty bullshit.
Now grown up problems keep me up at night, like Cancer, who thought that at my age that would be such a common factor in a my life, my blog and my strength. Just in the last few weeks, my husband continues his fight, a friend I love has been struggling with the loss of her husband, another friend I adore and love was diagnosed and a new friend, but one with just as much of a connection to my life found out her husbands cancer is back. The common factor is all these stories is Cancer, something that was someone else's problem and not mine until a year ago and now it is my problem on many different levels, as a care taker, a wife, a mother and I am also trying to define my role as a friend and supporter to those who need me as much as I need them. I have found that all my years of "being the friend" and listening I have become good at being support for those who allow me to be. I have been the person in my family that often is the problem solver, the helper, the voice of logic, but I am just now branching out more to people who really need me. I had to also take on a role that was very difficult for me and still feels awkward, I have had to be the vulnerable one who needs help and has had to learn how to accept it. But because of people I have met that have given me that support it makes me very aware and willing to pay it forward, i have learned from great friends like Carin, Tami, Mary and Barb how to be a good support in this community on these journey's and I embrace it and I get to help others, make friends and there fore allow other to pay it forward by learning from what I have been taught. It may not make sense to you, but it makes perfect sense to me.
My problems now are harder even though my life and child hood was no easy road because now I am the adult, the grown up, the decision maker, the figurer outer, the voice of reason, the one that is looked up to by those innocent people I created with love. I sometimes sit and think, I sometimes drift off in my own world and get lost, but one thing I drift off to lately is trying to figure out when I became the adult and if I am a good one or if my kids will look back at this time in our lives and be scared and feel I let them down. I feel very let down by my parents as an adult just as I did as a child and I don't want that.
This journal entry was inspired by my chldren, i am amazed at the people they are becoming and how they still like to spend time with me though I would expect them to be pushing me away. I talk to them often about serious and silly things. When I hear my daughter come home ranting about her day and school and troubles ( you know little girls) it takes me back and makes me laugh, I try not to take it to serious, but let her talk and share my experiences with her. Why did I want to grow up so fast? I wish I had not had to, I wish I had been allowed to be a child. Through talking to the kids though it took me back to the days of ole when the boy you like liking another girl was just the end of the world. I long for those days because this version of being a grown up that I got sucks. I make the best of it, don't get me wrong, it sucks, but we make it suck with style, I just wish I didn't have to try so hard all the time.
I have stressed to my kids to enjoy their childhood and to embrace it, I don't want them to grow up to fast and I don't care who makes fun of my son for playing with Barbies, better then kissing your daughter right!
I think though I have done a better job on my kids because during this conversation that inspired this post I tell Meredith that she is growing up so fast and before long she will be driving and dating and so on and she said to me that she didn't want to grow up, she wanted to stay a kid. At her age I wanted to grow a year a week.
This is another ranting post that don't make much sense I suppose, but the moral to the story is don't grow up to fast and even when you do, take time out to be a kid it will keep you sane.
Hugs and Kisses to you all,
Stefanie aka Fluffy
Tuesday, September 13, 2011
Awake
I am so tired and sleepy that I feel like a baby who has not had a nap in a week! I want to sleep so bad that I feel like I want to cry! I can not sleep, I have tired so hard to fall asleep for the last several nights with no success, it seems like I fall asleep just in time for the alarm to go off to get the kids up.
I am not sure what is keeping me up, there is so many options to chose from, tonight I could blame my foot, but I have pain pills, I could blame Michael feeling bad, but he is resting well, I could blame the pending PET scan results, but I am feel OK about that kinda I think. I could blame the up coming bone marrow biopsy, but I didn't expect to go ape shit over that until about Monday, because he may get sick again and it may not even happen. It could be finances, but I just try not to think about that anymore. It could be worrying about work or getting time donated, but I have no control over that either.
The phrase let god and let go comes to mind a lot lately, but those who know me, know I believe in god, but I am not very religious, I clash with organized religion and many of the church's beliefs so I am not sure how to really navigate this either. I have so much inside me that I can not let go. Anger first, I don't know why it is the first feeling that comes to mind when I think about my feelings however it does, than comes sadness, than worry, than frustration, and finally exhaustion. I am not saying I am never happy, I have sprinkles of happy and that comes from time with my family, my children and my husband, I enjoy them and I feel happy when we are together, but it is not a dominate feeling and even when we are "having fun" I have so much going in my head that it is like I have ADD and I have to fight off all these distractions to get caught in the moment. I used to get caught in the moment so easy, to easy sometimes that I would ignore other things that needed my attention because I just loved to live in moments with my kids.
I look back at pictures and each album captures a moment, I recently added a lot of pictures to Michael's group on Facebook because I wanted everyone to see him the person not just the illness, I want him to be seen in his moments. I don't think anyone knows him like I do, people think they know Michael and they think they know me as they probably think they know you, but they know this idea of who we are that they have created, there are few people who really know who you are, who knows your heart and your head. Not to say that is a bad thing either, if everyone knew us the same way than relationships would not be special, we would all have the same connections and impersonal interactions. What is sad is those people who you should have special relationships with, but they don't take the time to get to know you, even if they have known you your whole life. Yeah I know I lost a few of you there, but it is ok because those of you know got it, get it and that is all I am asking lol.
I have been very emotional lately, I am not sure why, I can't say this or that is making me feel this way, it is just an over whelming feeling of emotions that sometimes I feel like I can't control. There are things I want and even need personally for me, but I don't express them and wouldn't know who to express them to, but I don't even think that it is it. Perhaps just as Michael's body is getting wore out my mental is getting wore out, as many times as he has been knocked down medically, I have been knocked down emotionally. It would make sense that there would be some effects from all the ups and downs over the last almost year now.
When he was sick this last time it kind of hit me how lost I have gotten in all of this, I had become comfortable with people telling me over and over and over how hard this is on him and how hard it is on the kids and what I need to do to make it better or easier for them and I never even considered until the last week he was in the hospital that I am part of those feelings also. this effects me also, its hard on me also and I absorb it all for my husband and my children so I get hit perhaps a little harder or deeper or something. I mean I am not saying I have it worse, because I don't believe that or feel that, but I feel I am more in this than anyone else aside from Michael so all those who keep telling me how hard this is on Michael or the kids, I know that, I am not stupid and the ones who want me to feel sorry for them and cry to me about how hard things are on them, because of the poor choices they make, I don't have the energy for you and I don't feel sorry for you.
There is that anger turrets acting up again. Ok I just flipped off the air and I feel better, will try not to make another entry about my anger and frustration with stupid cause there is a better chance that we will find a cure for cancer than we will find one for stupid. If someone organized a walk to benefit a cure for stupid, I would donate, I would even walk. I bet records would be broke in fundraising, mostly because the stupid think they are not and would donate for their own cure lol. Ok I will stop now, I am just tired ranting now, though it is kind of funny ;)
I do find myself wanting to act out more than usual. I yell at my phone a lot and back space as to not be ugly. I try to focus on the positive, but it is so much easier to vocalize the negative or be angry. It is hard to find good things sometimes. These are reasons why it is good to have great people in your life, I have a person who lets me be angry and bitch and listens to me and never judges me for my anger. I have someone in my life that gives me great advice and helps me be impartial and gives me sound advice and I have someone in my life that makes me feel important and like I do matter in this journey, I think it may be because she has been in my role. People play different but important roles and I need them all. Some people have said to me they don't know how I "do it all", I just see it as the only option and I go! But to answer the question it is you all, the people who give me the outlets I need that make it possible.
This has not been a real emotionally charged entry, there was not tears shed, I think for the first entry, but it is just thoughts during my journey. I am emotional, but feel emotionless right now, perhaps that is what is keeping me up. I hold it all in, I let it out in little burst sometimes because I am overflowing. I can express my love and devotion that comes easy to me, but the other feelings I struggle with. I don't express my anger well or my sadness, or my worry, or my frustration or my exhaustion. I mention it here or there because writing is an outlet for me, but I don't really let them out. If that is the key to sleep, I am going to continue to be so very tired!
I am not sure what is keeping me up, there is so many options to chose from, tonight I could blame my foot, but I have pain pills, I could blame Michael feeling bad, but he is resting well, I could blame the pending PET scan results, but I am feel OK about that kinda I think. I could blame the up coming bone marrow biopsy, but I didn't expect to go ape shit over that until about Monday, because he may get sick again and it may not even happen. It could be finances, but I just try not to think about that anymore. It could be worrying about work or getting time donated, but I have no control over that either.
The phrase let god and let go comes to mind a lot lately, but those who know me, know I believe in god, but I am not very religious, I clash with organized religion and many of the church's beliefs so I am not sure how to really navigate this either. I have so much inside me that I can not let go. Anger first, I don't know why it is the first feeling that comes to mind when I think about my feelings however it does, than comes sadness, than worry, than frustration, and finally exhaustion. I am not saying I am never happy, I have sprinkles of happy and that comes from time with my family, my children and my husband, I enjoy them and I feel happy when we are together, but it is not a dominate feeling and even when we are "having fun" I have so much going in my head that it is like I have ADD and I have to fight off all these distractions to get caught in the moment. I used to get caught in the moment so easy, to easy sometimes that I would ignore other things that needed my attention because I just loved to live in moments with my kids.
I look back at pictures and each album captures a moment, I recently added a lot of pictures to Michael's group on Facebook because I wanted everyone to see him the person not just the illness, I want him to be seen in his moments. I don't think anyone knows him like I do, people think they know Michael and they think they know me as they probably think they know you, but they know this idea of who we are that they have created, there are few people who really know who you are, who knows your heart and your head. Not to say that is a bad thing either, if everyone knew us the same way than relationships would not be special, we would all have the same connections and impersonal interactions. What is sad is those people who you should have special relationships with, but they don't take the time to get to know you, even if they have known you your whole life. Yeah I know I lost a few of you there, but it is ok because those of you know got it, get it and that is all I am asking lol.
I have been very emotional lately, I am not sure why, I can't say this or that is making me feel this way, it is just an over whelming feeling of emotions that sometimes I feel like I can't control. There are things I want and even need personally for me, but I don't express them and wouldn't know who to express them to, but I don't even think that it is it. Perhaps just as Michael's body is getting wore out my mental is getting wore out, as many times as he has been knocked down medically, I have been knocked down emotionally. It would make sense that there would be some effects from all the ups and downs over the last almost year now.
When he was sick this last time it kind of hit me how lost I have gotten in all of this, I had become comfortable with people telling me over and over and over how hard this is on him and how hard it is on the kids and what I need to do to make it better or easier for them and I never even considered until the last week he was in the hospital that I am part of those feelings also. this effects me also, its hard on me also and I absorb it all for my husband and my children so I get hit perhaps a little harder or deeper or something. I mean I am not saying I have it worse, because I don't believe that or feel that, but I feel I am more in this than anyone else aside from Michael so all those who keep telling me how hard this is on Michael or the kids, I know that, I am not stupid and the ones who want me to feel sorry for them and cry to me about how hard things are on them, because of the poor choices they make, I don't have the energy for you and I don't feel sorry for you.
There is that anger turrets acting up again. Ok I just flipped off the air and I feel better, will try not to make another entry about my anger and frustration with stupid cause there is a better chance that we will find a cure for cancer than we will find one for stupid. If someone organized a walk to benefit a cure for stupid, I would donate, I would even walk. I bet records would be broke in fundraising, mostly because the stupid think they are not and would donate for their own cure lol. Ok I will stop now, I am just tired ranting now, though it is kind of funny ;)
I do find myself wanting to act out more than usual. I yell at my phone a lot and back space as to not be ugly. I try to focus on the positive, but it is so much easier to vocalize the negative or be angry. It is hard to find good things sometimes. These are reasons why it is good to have great people in your life, I have a person who lets me be angry and bitch and listens to me and never judges me for my anger. I have someone in my life that gives me great advice and helps me be impartial and gives me sound advice and I have someone in my life that makes me feel important and like I do matter in this journey, I think it may be because she has been in my role. People play different but important roles and I need them all. Some people have said to me they don't know how I "do it all", I just see it as the only option and I go! But to answer the question it is you all, the people who give me the outlets I need that make it possible.
This has not been a real emotionally charged entry, there was not tears shed, I think for the first entry, but it is just thoughts during my journey. I am emotional, but feel emotionless right now, perhaps that is what is keeping me up. I hold it all in, I let it out in little burst sometimes because I am overflowing. I can express my love and devotion that comes easy to me, but the other feelings I struggle with. I don't express my anger well or my sadness, or my worry, or my frustration or my exhaustion. I mention it here or there because writing is an outlet for me, but I don't really let them out. If that is the key to sleep, I am going to continue to be so very tired!
Thursday, September 1, 2011
Am I talking to you?
Unbreakable
I can't sleep so why not type, it may help! I can't get past the fact that he is still feeling so bad even though his counts are stabilizing, it makes me feel uneasy. PT never showed up either, I hope to see them today. Not sure who all reads this page, but I want to put this out there. Michael does now and will always come first before feelings getting hurt because people can't see past their own selfish train of thought. My children and my husband are where my obligation and loyalty lie. My children need to have him around just as I do. I love him enough to put myself last, I love him enough to look past his pain and his hurt to see the scared man he is. The fact that I am trying so hard to build him up and get him well and others are putting their feelings first and their own agenda's before MY FAMILY is not ok. I have tired to make peace and I have tired to heal, but I am not going to continue to be a punching bag or allow him to continue to be a punching bag because there are those who can not come to terms with their own guilt and still need someone to blame. When the BS don't stop it is hard for me to keep making excuses for you, you tear me down and I build you up to him because I thought that was what was best for him, but right now I am not sure I was right. He is fighting hard and for the same people to still be fighting him and taking his energy away from getting better, well tells me that nothing was learned. I try and try to help, I try and try to give advice on what he needs, yet he still comes second. I am hurting and I can't sleep because I see what you are doing to him, I can take it, go head punch me, I don't feel it anymore, but I seen that he shut down today and I need his head in the game. He is sick, he still has a long battle ahead of him, it is not over. I may always hurt over this for what it has done to my husband and for the loss I feel, there are things I will never understand and I have to stop trying. I can't understand how I am expected to comfort those who hurt me, why do I feel compassion when none is felt for me. I don't want to feel for people who are so careless with the life I hold so dear. I want to be strong enough to say I don't care.
Michael said early on ACTIONS SPEAK LOUDER THAN WORDS, and he was right, and the actions continue to speak. There are few who we felt his energy should be used on, energy that he needs to fight, I thought perhaps if he spent that energy it would bring healing and it would give him some positive energy to replace the hurt and that would make up for that spent energy. Again I was wrong.
I could call out names, or I could be disrespectful and just say exactly what is on my mind, but I am above that. I have chosen to be above it the whole time. As I was attacked unfairly and lies spread about me and my family, I didn't waste my energy on you, I put him first, instead of putting my feelings first and wasting my energy on you I put him first and I put that energy in to him. Perhaps if your energy was there putting him before yourself, than you would not be holding so much guilt. I know I keep saying "you" and I am not talking to "one" you, there are many of "you" and if you are reading this and feeling guilty I am talking to you, If you are reading this and feeling angry at me or him I am talking to you, if you are on the phone reading this back and forth and talking about how right you are and how wrong he is or I am than I am talking to you. If you decided that your friends or your social life or your time was more valuable than him I am talking to you. If you are angry that he has support from others in his life instead of glad he is not alone, I am talking to you! If you put yourself before others when they need you most I AM TALKING TO YOU. Even if you have nothing to do with my personal situation and you are or have done these things I AM TALKING TO YOU!!
I am not talking about you, I am not talking at you as many of you like to do, and I am not talking behind your back which is another favorite of yours. I am talking to you!
The blog entry is not endorsed my Michael Thomas as his thoughts and feelings are not endorsed my me, they are supported though and if you can't figure out the difference between support and brain washing than I know I should not have to finish this sentence, but since you are hard headed I am going to I AM TALKING TO YOU!!!
As he fights, he takes this poison in every day and absorbs it, and this time I am talking about the chemo when I say poison, not you! You go on living your life, I am sure you stop to think of him usually because something reminds you that you are being an ass. I am sure you miss him, when you are not busy with your life. I know you love him; just too bad you love your self more. He fights for me and his children and we fight back for him, perhaps if you were fighting for him he would be fighting back for you and the more people has to fight back for the harder he might fight. When you say it is to hot or to cold or your to tired or it’s to late, or you have plans when he needs you than you expect him to endure so much to live, your life don't depend on others or you might think differently. He has to trust right now. He has to trust his doctors, he has to trust me, he has to trust his body, he has to trust his self, he has to trust god. It is hard to trust when feel scared and insecure as he does and YOU make him not trust you, I didn't do that and he didn't do that. Some of you checked out on him long before he got sick, some of you think you were there, but chose another life just a few years before he got sick. Some of you believe you made our family, but we made our family. One of you he is not ready to give up on and he loves you very much and I know you know who you are and just so it won't get messed up I will call that name out Stephanie your brother loves you so much and he called you today because he is scared of losing you again, He don't want you to chose or be in the middle of anything, he just wants you to be his little sister and fight with him and you should be allowed to do that with out being put in the middle by anyone, no one should expect you to break your bond with him because they chose not to have one and they should not look at you as their "in", they are their own "in" so to speak and you were your own "in" and they chose to throw it away. You chose to allow you’re self to see past the bull shit and see we need you and you need us. We don't want all of you, just a part of you. Just know that no matter what, no matter how hurt or angry he is Michael loves you so much and as long as you can accept how he feels he can accept how you feel, you don't have to agree, you just have to put his feeling first when you are with him because he needs you.
I am a good mother, I am good wife, I am a good provider and I am good person and I don't need anyone else to validate that, Michael validates that. If you don't like me, who cares I can live with that, but if you can't respect me than don't expect me to keep pretending.
I am putting this out there because righting it what I do and I feel like it is my turn to be heard. I don't want anything in return, no response, any apology or grief. I just want you to let him be and if you are needed and want to help I will accept because that is what is best for him, we need help with the kids, with bills and medications to keep him alive, I need those who have not completely pushed him out of their lives to show up and be there for him when he is begging for attention and when he is alone. I don't need anyone telling me about his condition or what is best for him medically, I got that and I have kept him alive this long, give me some credit, I deserve it. I don't need anyone criticizing me for being with him when he needs me. I am not lazy, I have always worked, whether I worked to support my family or the 2 years I worked as a house wife and mother because that it what my family needed. You don't know why we have made our choices because you chose not to be part of our lives until he got sick. I work when I can and lazy, shit, do any of you know how much harder this job is? Perhaps had anyone else been willing to step up to the plate 10 months ago to really be there and be involved I could depend on you to step in so I could be more places I need to be, but you chose differently and that can not be undone and no one can catch up now.
When my bank account is 0 because I spend my money on bills and kids and medications and you tell him that you only have 300 in the bank and make him feel bad for needing a 10 dollar prescription, or when you tell him he only calls when he needs something, or you tell me that I should be able to provide better that is not help. Than in the same breath you say let us help, well do you want to help or do you want him to feel guilty for needing help. Do you want to help or do you want to make your self feel better. How many of you have picked up the kids on a regular, how many have asked if the kids had food on a regular, how many have asked me if I needed a shoulder, just once when you were having your girls days out did you ever think, I bet Stefanie could use a break like this? No and I can live with that even though it makes me feel hurt, but again this is not about me, so let me ask, how many of you have stopped by when Michael was sitting home alone all day, and how many of you have brought Michael food when he was to weak to feed himself, how many of you took him out to lunch or a movie, how many of you called him just to talk about anything except cancer, how many of you took him to a ball game when he wanted to go, how many of you had the time, but had something better to do. There are enough people in this family with days off through the week and who are retired and who can afford to take an early day to get hair done, so he should never have to feel alone, but he does. He has begged for companion ship, I have emailed and begged for him. So let me use some names again and answer to you who has made that time for him and than you ask me why they come first to him and why he asks for them instead of you, Those people who put him first and didn't have to were Janet Rich, Jim Rich, Tami Schott, Lilia Rodriguez, Kimberly Etherton, Lisa Neal, Kevin Etherton, Carin Jett even during her toughest times, Mary Sanders, Sue Wyatt, Nelda Carman, Walter Brock, Janna Baldridge, Brittany Etherton, Andrew Pettit, Dan Torres (who has made it possible for me to be there) Many Many people from his wellness group and my friends and family group at Gilda's I won't name you all because I will leave someone out and most recently Stephanie Mallory. I may have left someone out and I didn't do it on purpose, I have not yet been to bed at it is 7:16 am, so I am not as sharp and I could be, but if you have to ask "was I a person she left out" NO I WASN'T TALKING TO YOU.
I will close this with something I raise my children by; Life is about choices and living with those choices. I love you all, but sometimes loving someone from a distance is the only way you can love them. Like my own mother, I love her, I think of her and I miss her, but I have to love her from a distance.
Again this was a public service announcement by Stefanie Gail Thomas and in no way shape for form is this Michael's words, I have a suspicion he will agree, but I have spent a long time relaying messages for him and being hated for it, at least this way you can hate me for my own message.
The loss is great that I feel for some that just won't let me help, for others I feel nothing.
If you made it to the end of this entry go take a Xanax, Michael has to take one every time he gets to the end of your shit so it is ok!
Thursday, August 11, 2011
Dear Enemy,
Today I try to make peace, peace with you cancer, I am tired of fighting you, we are going to be in each others life so is there any way we can learn to get along. There is no way to rid you, no matter if you are active, non active you are going to be in my life. You have been in my life for a long time, your first presence was made when you took my Great grandmother from me many years ago, she was the most important person in my life to this day and you took her. You have taken so many wonderful people from myself and those I love. You are evil, but I am trying to make peace with you so that I can live with you. I am not going to quit trying to harm you, I promise that I will never stop hating you, but I have to make peace with you in order to live my life. You have taken enough lives, you don't need mine, you don't need his, we will live in spite of you.
Hearts are breaking today because of you, it hits home today as my heart is breaking, but you do this every minute of every day to someone. From those who are just getting the news, hearing those words for the first time to those who are mourning the loss of a life you have taken from them. Right now as I write this you are hurting someone and for that reason I may never find peace with you, but I am trying. You are a selfish uncaring presence, you take sleep away from us, you hurt us, you make us cry, you cancer, you take away security and balance, you however can not take away our love. Love is something that you will never have nor take. There is none that has not been touched by you in one way or another so I know with all the people in the world there are those who have learned to make peace with you so I know it can be done.
I will need help in doing this, I will need help everyday to have peace with you in my life, help from friends and helps from god, help from family. I know that I am more fortunate than others, I lost my grandmother, but I still have my husband. I am not grateful to you for that, but I am grateful that I have him. I know that if we get the results we want to hear, the results that you are in hiding, that we scared you away and he is in remission it may make it easier to find that peace. However the fear of a re-occurrence or a new form of your ugly face will again make it hard. You are in my head, you are in my dreams and you consume my heart today, but today is the day that I try to find peace with you so that you can no longer have that power over me and I will take my life back from you some how and in time I will accomplish this goal. I will simply give you the middle finger and bid adieu as I take him to chemo and we fight you in more than one way!
Hearts are breaking today because of you, it hits home today as my heart is breaking, but you do this every minute of every day to someone. From those who are just getting the news, hearing those words for the first time to those who are mourning the loss of a life you have taken from them. Right now as I write this you are hurting someone and for that reason I may never find peace with you, but I am trying. You are a selfish uncaring presence, you take sleep away from us, you hurt us, you make us cry, you cancer, you take away security and balance, you however can not take away our love. Love is something that you will never have nor take. There is none that has not been touched by you in one way or another so I know with all the people in the world there are those who have learned to make peace with you so I know it can be done.
I will need help in doing this, I will need help everyday to have peace with you in my life, help from friends and helps from god, help from family. I know that I am more fortunate than others, I lost my grandmother, but I still have my husband. I am not grateful to you for that, but I am grateful that I have him. I know that if we get the results we want to hear, the results that you are in hiding, that we scared you away and he is in remission it may make it easier to find that peace. However the fear of a re-occurrence or a new form of your ugly face will again make it hard. You are in my head, you are in my dreams and you consume my heart today, but today is the day that I try to find peace with you so that you can no longer have that power over me and I will take my life back from you some how and in time I will accomplish this goal. I will simply give you the middle finger and bid adieu as I take him to chemo and we fight you in more than one way!
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