I have strayed far away from writing anything on this blog for several months. Time has been good and bad.
Past is behind me, leaving with it, sadness and tears for things not resolved. However, life is full of ups and downs, and I am trying to live in the best positive environment possible~love. And, living in the present moment, taking in every little blessing and grace, loving the family around you...this is all soul satisfying.
Tomorrow is the first day of the rest of my life, or so it seems. Emory appointment. Repeat bone marrow biopsy, labs to include more genetic testing. Where do we go from here? Six weeks without chemo, and I can tell a difference in my QOL. Yes, QOL. Quality of Life. That's what they try to provide for us until a cure is found. Mine has tanked. Save ya all the details, but this journey is the hardest one I have ever been on.
Monday, October 31, 2016
Monday, May 30, 2016
Slow
Life for me is too slow now. Wanting to do things that I previously could; even writing.
The thoughts are too slow and jumbled most times, heck...I can't even say some things grammatically. Pffftttt!
I am trying. Trying to remain positive. Trying to beat this; I know it won't go away but I think I am giving it a run for the money. "IT"...blood cancer. No escape. It's everywhere. No cure.
I asked my middle son to try and figure out a cure...mom, even the smartest people cannot figure it out...ok then. We know the outcome, when, well that's God's deal.
The thoughts are too slow and jumbled most times, heck...I can't even say some things grammatically. Pffftttt!
I am trying. Trying to remain positive. Trying to beat this; I know it won't go away but I think I am giving it a run for the money. "IT"...blood cancer. No escape. It's everywhere. No cure.
I asked my middle son to try and figure out a cure...mom, even the smartest people cannot figure it out...ok then. We know the outcome, when, well that's God's deal.
Tuesday, April 12, 2016
Saving Some Links
This post contains some links that I have been reading regarding stem cell transplant.
Yes, this is a very personal decision, and a TOUGH one!
http://www.nature.com/bcj/journal/v2/n3/full/bcj20123a.html
http://www.bloodjournal.org/content/116/13/2224?sso-checked=true
All of the information is daunting. Am I a good candidate, yes. Especially with my mental and emotional stamina! It requires a complete ablation of the immune system, and then a donor! The most important part, a donor. Going to put some more research into the topic and consult with doctor on Thursday. Let's see what this old fart says about this! Luckily, I am in at Emory Cancer Center, but that doctor, he is not so stem cell friendly. We shall see!
Blessings
Yes, this is a very personal decision, and a TOUGH one!
http://www.nature.com/bcj/journal/v2/n3/full/bcj20123a.html
http://www.bloodjournal.org/content/116/13/2224?sso-checked=true
All of the information is daunting. Am I a good candidate, yes. Especially with my mental and emotional stamina! It requires a complete ablation of the immune system, and then a donor! The most important part, a donor. Going to put some more research into the topic and consult with doctor on Thursday. Let's see what this old fart says about this! Luckily, I am in at Emory Cancer Center, but that doctor, he is not so stem cell friendly. We shall see!
Blessings
Sunday, April 10, 2016
Sunday Reflections
"Feel the emotion, accept & offer it up, then move on. For He is with to you carry the burden, and believing is all you need." Cara Lynn McLaughlin
I love Sunday's; the lazy quiet mornings. I love listening to the birds and immersing myself into my own thoughts. It used to be a routine in this house to get up and get to Mass, come home and dedicate the day to relaxation, and family time. Gardening work in the spring and summer, and the same in the fall in winter! We DO live in Georgia!
I would like to blame my illness entirely for our lack of participation in the weekly Mass, but then I would have to go to Confession and that's just a whole 'nother can of worms! Religion in this day and age, in my humble opinion, is the like Presidency...just not quite sure which guy to choose. I am sure that makes sense to some people reading.
Back to my point...this is my time of reflection at the beginning of God's week, a time to rest and prepare for that awful Monday that is surely coming. In full disclosure, I wear my pj's all day Monday too; ah, who am I kidding?? I wear my pj's all the time, even considering a line of pj's that are wearable. Dern, off subject again!
Sunday is not the only day that belongs to God is the point I am trying to make. Yet in the still of this morning, I find myself reflecting on the emotions that I keep bottled up inside. I do not want to talk about this illness, but I have to. I have to feel the emotions, allow them to rise to the surface. It sucks. Cancer sucks. It has already been said, and somehow that is the only emotion and word that I can put to this awful disease that rips your whole life away, in one swift second. Well, this is MY life that it stole and I am not happy with that decision. This is the prime of my life "they" say. I was finishing up my BS in Criminal Justice, TWO MAJOR classes away, then I was off to save the world. End injustice. Fight the criminal justice system from the inside and out. MAKE A CHANGE! Brings Michael Jackson to mind, "I'm gonna make a change for once in my life, gonna feel real good, gonna make difference, for once in my life"...https://www.youtube.com/watch?v=90C-Wx_uGdM
Now in my life, getting out of the house is an adventure! Finishing school is not an option due to the cognitive damage from the TIA, and continued blockage...but I digress. Started singing and the kid came in and needed a KIT KAT bar, and wanted me to hide them from her brothers. Real life people. Sitting behind the keyboard, for some of us, is not a nice place of solitude.
Bringing the emotions to the surface, and the next step is accepting. Yup! Every day is some sort of act of acceptance. Why? Because every day is a different emotion attached to a different symptom complaint. Or if I am overly tired that day, yet slept 15 hours the day before, it gets me mad. A little cold, turned into a month long agonizing immune system attack. Ear infection, cough, fever...let's not revisit it, I am on the upswing and trying to find a normal balance. So accepting the emotion, and allowing myself to actually feel the pain, sorrow, joy, happy...whatever it is, and then offering it up to God. He knows my suffering. He is there to carry it with me, not FOR me, but WITH me. Then, I have to believe with my whole heart that He knows the path. He sees my journey. If every thing that I have been taught, or learned in this life regarding a Creator, I want this one important issue to be addressed:
I love Sunday's; the lazy quiet mornings. I love listening to the birds and immersing myself into my own thoughts. It used to be a routine in this house to get up and get to Mass, come home and dedicate the day to relaxation, and family time. Gardening work in the spring and summer, and the same in the fall in winter! We DO live in Georgia!
I would like to blame my illness entirely for our lack of participation in the weekly Mass, but then I would have to go to Confession and that's just a whole 'nother can of worms! Religion in this day and age, in my humble opinion, is the like Presidency...just not quite sure which guy to choose. I am sure that makes sense to some people reading.
Back to my point...this is my time of reflection at the beginning of God's week, a time to rest and prepare for that awful Monday that is surely coming. In full disclosure, I wear my pj's all day Monday too; ah, who am I kidding?? I wear my pj's all the time, even considering a line of pj's that are wearable. Dern, off subject again!
Sunday is not the only day that belongs to God is the point I am trying to make. Yet in the still of this morning, I find myself reflecting on the emotions that I keep bottled up inside. I do not want to talk about this illness, but I have to. I have to feel the emotions, allow them to rise to the surface. It sucks. Cancer sucks. It has already been said, and somehow that is the only emotion and word that I can put to this awful disease that rips your whole life away, in one swift second. Well, this is MY life that it stole and I am not happy with that decision. This is the prime of my life "they" say. I was finishing up my BS in Criminal Justice, TWO MAJOR classes away, then I was off to save the world. End injustice. Fight the criminal justice system from the inside and out. MAKE A CHANGE! Brings Michael Jackson to mind, "I'm gonna make a change for once in my life, gonna feel real good, gonna make difference, for once in my life"...https://www.youtube.com/watch?v=90C-Wx_uGdM
Now in my life, getting out of the house is an adventure! Finishing school is not an option due to the cognitive damage from the TIA, and continued blockage...but I digress. Started singing and the kid came in and needed a KIT KAT bar, and wanted me to hide them from her brothers. Real life people. Sitting behind the keyboard, for some of us, is not a nice place of solitude.
Bringing the emotions to the surface, and the next step is accepting. Yup! Every day is some sort of act of acceptance. Why? Because every day is a different emotion attached to a different symptom complaint. Or if I am overly tired that day, yet slept 15 hours the day before, it gets me mad. A little cold, turned into a month long agonizing immune system attack. Ear infection, cough, fever...let's not revisit it, I am on the upswing and trying to find a normal balance. So accepting the emotion, and allowing myself to actually feel the pain, sorrow, joy, happy...whatever it is, and then offering it up to God. He knows my suffering. He is there to carry it with me, not FOR me, but WITH me. Then, I have to believe with my whole heart that He knows the path. He sees my journey. If every thing that I have been taught, or learned in this life regarding a Creator, I want this one important issue to be addressed:
GOD DID NOT CHOOSE THIS CANCER AS PART OF MY LIFE JOURNEY
I believe that God knew me before the beginning of my existence.
I believe that He choose me to be the uniqueness that I am.
I believe that God has no hand in giving someone an illness, tragedy, or suffering in general.
I believe in a good and loving God, who extends His love to all those that He created.
I believe God demands justice for every living kind.
I believe in and accept mortality, especially my own. He knows the time and hour, and my faith is to live and love this life, in the present moment.
I believe in loving every individual to the best of my ability. Even though I am imperfect in my heart for my real feelings for some humans.
I believe in forgiveness, and just flat out forgetting. Mostly because my memory is that of Dory the fish, but now because, why remember? Why linger with remembering? If we are supposed to forget the past, then why forgive but not forget? You can live each moment remembering the awful, or focus on the best! Even someone who is out of your life, for whatever reason, memories remain. The painful ones, let them go. Any hurt or regret, any of that junk, let it go! Trust me, I spend a ton of time in reflection, reading, thinking, then thinking too much...lol...facing a journey such as mine, a life of cancer, a Cancer LIFER - a positive and fresh perspective on the meaning of life, who has meaning in your life, and who is the love of your life, is all that a soul should focus on.
Lazy, or WHAT?
I'd love to call this condition, lazy; but, the title definitely does not work. However, I find my mind has one thousand things to say, but my body does not want to respond.
Physical therapy is working. It has also revealed the definite weakness that has been caused by the multiple TIA's, and shows the need for goal setting, and for accepting my limitations. Yesterday was tough physically, yet also emotionally. When our minds want to do something, and our bodies do not respond in the natural way, I believe it is normal to become frustrated.
Take my hair for example; a daily chemo pill takes its toll on every aspect of my body. Seems a cycle of sorts. My hair was thinning and falling out and not growing, leaving me looking, in my opinion, a hot mess. Shaved it, and it wouldn't grow; but now it is growing, and falling out at the same time! Fingernails, same thing. It is a never ending cycle; so, I accept it. Why fight? Am I frustrated, yup! At the end of the day though, it does not mean a hill of beans.
After the second TIA, I was moving pretty slow and then was knocked down by an upper respiratory infection and horrid ear infection. I do believe I have not had pain like that in a while! Woke up on a Sunday and thought a thousand fires had been lit in my ear overnight! Still on the antibiotics, and without getting personal, THEY SUCK!
Physical therapy is working. It has also revealed the definite weakness that has been caused by the multiple TIA's, and shows the need for goal setting, and for accepting my limitations. Yesterday was tough physically, yet also emotionally. When our minds want to do something, and our bodies do not respond in the natural way, I believe it is normal to become frustrated.
Take my hair for example; a daily chemo pill takes its toll on every aspect of my body. Seems a cycle of sorts. My hair was thinning and falling out and not growing, leaving me looking, in my opinion, a hot mess. Shaved it, and it wouldn't grow; but now it is growing, and falling out at the same time! Fingernails, same thing. It is a never ending cycle; so, I accept it. Why fight? Am I frustrated, yup! At the end of the day though, it does not mean a hill of beans.
After the second TIA, I was moving pretty slow and then was knocked down by an upper respiratory infection and horrid ear infection. I do believe I have not had pain like that in a while! Woke up on a Sunday and thought a thousand fires had been lit in my ear overnight! Still on the antibiotics, and without getting personal, THEY SUCK!
A Project
It's time to put my strength into feeling better and doing more with my time. Two weeks post TIA, and I am getting stronger, and my mind is getting antsy.
I have a craft table where I decoupage quotes and random things that make me happy. One particular quote, "what does cancer feel like", has been nagging at me to explore the topic.
I have a craft table where I decoupage quotes and random things that make me happy. One particular quote, "what does cancer feel like", has been nagging at me to explore the topic.
Wednesday, February 24, 2016
My Life
We all have but one life, how do we live it? Does a person stay under the control of another? When someone makes a promise and breaks it, how does one respond?
For me, it is time for a response. As if cancer isn't enough. As if two strokes are not enough. My brain and heart still function, and when a person aligns himself with destruction, I need to remove myself, in order to protect my own dignity, but most of all, save my children.
There is a time in one's life, when he can either move in the positive direction of life, or entangle himself with vile, evil people and make decisions that have dire consequences. Some people are not happy in their own lives and find it a challenge to destroy those who have something they do not. Such has been my life, and marriage. I believed in fairy tales. I thought that my life could be so much more than that of my parents. We even made a promise to each other to be better than our parents, but one of us failed. Turns out, money talks. Turns out, a woman so hell bent on destruction, wins. And, her lap dog, thinks he wins too. Sorry folks, lies do have a way of coming out. All of the mess that was spewed trying to ruin my credibility as a person and mother, it didn't work. It only made the two of you look even dumber, and that is an understatement.
I have to write and get this outta my heart and head. This is the only way I know to heal, or to begin healing. I feel like a total failure, with a lack of seeing the obvious. My heart knows the truth, but my head refuses to believe that a person can be so destructive. Ruin his own family, to spite the nose on his face, and repay the money he has yet again, not managed.
Friend, you made a choice, that choice has consequences. To lie and manipulate children, that is cruel. To lie and manipulate the mother of your children, and use the kids, that is just twisted. What you did, you have to own up to, but you won't. A man of honor admits his mistakes when he is wrong, and takes the punishment. A man of honor, proves to his children that he is made of something, and will do everything to protect his family. You, are not that man. You are a coward. The friends you keep, they do not have the best interest of your family, but yet you continue to follow along. A follower. I am a leader, always have been and always will be. I do not follow in the shoes of people, I prepare a path to help others along the way. I am not who you say I am, but there sure is a consensus about who you are, and these people have seen you in action for a long time. Worst of all, most of those people are your flesh and blood. Young men, waiting to see their father be a true man. A young girl, who will look to her father for protection from coward men; but if you are a coward, how do you teach a young man or girl, NOT to be a coward.
I got this! The fear and heart ache, the pain of losing, the humiliation of being at the bottom with nothing. It is all lying at my feet, waiting on a response. My heart wants to yell and scream, but no one listens. I have lived in an emotionally abusive relationship for years, everyone else knows it, so why hide behind the mask? Friends know, family knew...but family did nothing to catch a bird with a broken wing, and latched onto the stories. One who is talking the loudest, is usually the one with his secrets. I have all your secrets now! You have been exposed, and only the truth will come out of my mouth. While you are off fighting a battle that you will probably win, cause stuff happens for stupid people, and people who wish to hide, well, they just take the pain.
I think you forget, my diagnosis gave me a whole new attitude on life. If you are not in it, you are out. You have chosen to lie, and there is no other way to put it. A downright lie. You always have a saying, "you can fool the fans, but not the players", that is exactly how you operate. You are a liar to the face of those you work with, trying to get ahead in this game called life. Not happy with anything that you have been blessed with: a home, beautiful children, and a job that is more than what you deserve (talking about the hand that feeds you, not a good character trait).
You have forgotten that I am strong. You have forgotten that I have people in my life that love me, and want to see my children at peace. You have seriously lost all focus on what is good and noble. Once again aligned with malice, a choice you can try to convince our children is "necessary". Enough is enough. At the end of the day, I have a beautiful life. Children that will do whatever is necessary to help provide, where you left off. And, my friends.
Friends...the strings holding me together. Letting me know I am not alone. Those who know the truth; who have known the truth. No more hiding, no more fear of what can happen to me. Use my facebook posts, use whatever you can to try and diminish me, so you look bigger. I do not look for fame and glory. I do not use other people, and lie to them to get anything! I will not hide behind fear of you any longer. You are weak and I am strong; she is weak and I am even stronger. Why? God is on my side. Ya'll have a snowball's chance in hell of being happy. I have never seen such dysfunction in my life. Going to such great lengths to avoid the truth; luckily I do not choose heaven and hell for people!
The kids and I are ok. We will be ok. The last two years were hell...I thought it had ended. After reading a "note" today, that my son wrote...it was painfully clear that this behavior has been going on a long time. Remember the "squash" incident, and how you joked about it during the divorce. That hurt me, but not because of me, because you are so arrogant and misguided, that you thought telling a joke, about a time when you hurt our children, was funny. And, the funnier thing, the text came to me by mistake. I believe in second chances; sometimes even third and fourth chances. I believed that I could love you more than the vile people who gave birth to you. Every single one of them petty and jealous. Three siblings not talking to each other, and while their mother lay dead, I witnessed one of the most ignorant interactions...and so did our kids. Hate is a strong word, but that woman has done nothing but fill our lives with chaos. She has been selfish since the beginning. She never got her way, when it came to me, and she has waited for the day to divide our family. The same woman who said we didn't need any more kids, and was a witness to another family member calling our child a ni**er! I could start twenty or more sentences with, "the same woman", but why? She is out of my life, the best part of the divorce! She is out of the childrens' lives, and quite frankly did not really make an effort to step up. Too busy with her boyfriends! Too busy with her animals, gross and smelly! She really gives new meaning to the phrase, old cat lady, with ten dogs. I hope that is where you are living, in filth. The smell of shit and animals, you deserve nothing less! I hope that every day, that you do not call or text, or spend time with your kids, that you have a miserable day. I hope you see happy families, and daddies with their babies, knowing that your chances YOU ruined.
You like to tell people the divorce was all my doing. That I up and left with another man; I am sorry but I won't let you tell my story. Now, the truth is out. You are not what you pretend to be, but I am going to sit and prepare for my life, all the while you try and lie about who you are. I won't lie. I will not hide in the shadows of guilt and humiliation any longer. I am a good person. I was a devoted wife and mother for well over 20 years, and your unhappiness is what led us to this fork in the road. Mean words, mean actions...you crossed the line. And I am done trying to figure out how I can do things differently, how I can change my behavior to accommodate yours. Done. I have life left within me, and as long as I do, I am going to be happy. I am going to fight this disease like a warrior because my children need me!
You, you keep on doing what you are doing. Your choice has been made. You have had four weeks to tell the truth; now it is not in your best interest? Yeah, well let's see how that bodes for you on the judicial side. It didn't fair really well in this house, because brick by brick, plank by plank, you are revealing who and what is important. I do NOT lie to my kids, and I do NOT use them or speak negatively about you to them, there is no need. You do all the damage yourself. I will be right here with my kids, picking up the pieces, hugging them, and loving them til my time is up. And then, every detail of my death, including the money, is in the hands of someone that I know without a doubt, I can trust and she believes and trusts in me!
I am not sure when the pain and hurt will subside, but I do know that now is the time that I have to find the strength to fight. Not physically, this is a battle that has no violence. It is a battle to live, because I want more than anything to continue to be the rock that my children depend on. I WILL, and have already exceeded being a better mother than both women "mothers" in my life! They are both out of my life, one will NEVER regain entry...one I still hold out hope, but know that is also a losing battle.
Thanks for the clarity. Thanks for the cry. Thanks for letting us all down.
Your best interest was your family, the truth would have been a whole lot more cost effective, and would have preserved the family, to try and continue to heal. The lie has cost you, a true good woman. Who knows how the lie will continue to hurt our family, but you keep it up, cause lies and deception, well...you are working with the right woman to get that accomplished. I have nothing to fight, but you will not drag my name through mud again. I will not allow you to continue to destroy our family.
Four weeks, and nothing but a defense. A lie. Using my illness as an excuse for bruises, lifting bullshit memes from my Facebook page, it all makes you look desperate. In four weeks, minimal time with your kids. The girl cries, she doesn't know the truth, one child I can protect from you and the vile woman. Cries for her daddy, not knowing that his choices are separating her from him. A child that we rescued, or hearing your side of the story, it was all my idea. That is fine, cause it makes you look even dumber. I do things that I feel God has called me to do, while this situation is much better than what her life would have been, it is less than ideal. It is not what I had chosen for her; a child would ideally need two parents, but in this case, she will clearly be loved. Her brothers love her more than their own lives, they are young men of honor. Three boys who step up to take care of their mother, and their sister, are worth more than gold. And, ya'll missed it. Missed the years that could have bonding experiences, with utter stupidity. The time that you were given with me, all gone in an instant. Promised to take care of me and be with me til the bitter end; well, preserving your dignity with non-relevant people, that choice is the one that is giving me the opportunity to see how much "love" really exists. A second stroke, and you are no where around...your own actions and choices. Saying you were sorry, would have gone a long way in these circumstances. Admitting that a problem exists, and working to resolve those issues, well you blew that! Trying to manipulate me into getting an order lifted...it doesn't work like that. First of all, I will tell the truth, not a good situation for you at all. I am done being silent. I am done acting like it doesn't happen to people like me. Anger, resentment, jealousy...not me, but definitely you. Holding onto the past, and not letting it go. Not admitting the mistakes that led up to me leaving you, but instead making a case against me!? Reading my private messages, private because my friends on the other end, they are my friends, and maybe they do not want you to know their struggles. Copying my facebook page, my pics, my anything, to try and prove I am unfaithful, or unworthy. Do you want to win? Do you want to prove those things? They do not exist, sir. I am faithful and worthy, you are digging for something that will not exist. I gave you my love and my life, and this is what I have in return? Someone who will stop at nothing to prove he is "right", when clearly he has been wrong for a long time. You win. Whoever is listening to you, either send them to the source, me or keep my name outta your mouth. I always thought winning meant you got something extraordinary, so if I continue to think like that, I am the winner! Extraordinary are my kids! I live for nothing more and nothing less. You live for drama, and chaos. Well, you got it! Drama is having anything to do with her, and chaos is the mess that you will have to deal with during your proceedings. This is your ball of wax; I asked for the truth, you refuse to admit any wrong doing, so keep it up! Your family was at stake, I think you proved tonight, we are at the back of the line. Your hands are tied, and your choices leave you where you are. Quite frankly, with the exception of the stroke, this has been a fairly peaceful four weeks. No drama, no drunk. Just the kids and I! They have stepped up to the plate to fill in, and are doing a wonderful job. Never mind our oldest thinks his life is on hold...I am kicking him out! He needs not take on your responsibility; he needs to go and live his dreams. That is what we do for our children. They have been called stupid and brainwashed, by our entire family. Who does that? What kind of father allows for that to happen, oh I know, one who told people those stories. One person who told other people that I was a bad mother, my kids do not do school work, that I am a liar and a drug and alcohol addict, and blame other people. OH NO, I do not blame other people! I am totally to blame for not realizing the damage that damaged people can do. For trusting people I knew would let me down! This is all me! I claim the award for dumb love; PollyAnna as a friend calls me! I try to find the best in people and work with that, in this current situation, I cannot find any good in the people that I am dealing with. That is sad. But, I do not have to do another thing, and can be rid of the whole mess of them and never look back. I try to do the right things as a mother, because who wants to be a single mother? Who wants to look at their kids, and admit she is at the lowest in her life, and does not know what to do. This is what happens when someone is allowed to control and manipulate another human being. We become so used to the control, and do not realize that it is really happening. It is time for my truth. It is time for me to live a peaceful life with my children, and get all drama out! There is enough sadness and ugly people in this world, I beg God to rescue my kids from this, beg Him to take away the cancer.
The other truth is, I am really sick. I do not want pity, and people say the dumbest things to someone with a progressive form of cancer. No, there is not a cure. No, I do not know when I am going to die. No, being on chemo everyday is NOT a good thing. Yes, I have my advance directives completed, yes my will is up to date now, and yes someone who is close to me, is helping me realize, I CAN DO THIS!
At this time, I sit and wait. A game of chess, who will make their next move. Well, for now, I am recuperating and getting stronger. Once PT starts, I will be on my way to walking better than ever, and if I can't, I will still get stronger! Disability is in progress, as is selling my life insurance to pay for my expenses now, so the children do not have to worry. I want my time spent loving my kids, enjoying life, and loving my friends. There is nothing more important than love, we get one chance in life. One life because we are all born dying. I have had a good life, but now is the time to step up my game, and be happier. Learn to live everyday in the moment, because your last interaction with me, could be the last one. I do not take that lightly. I want to make memories, happy ones, with people who love me and my kids. I know where they are, it is a matter of getting to them, and bringing along all this medical crap! God will provide the way, if I didn't believe in Him, I would be a crumpled mess on the floor all day.
The latest stroke left me a heap of slobbering and vomiting when we reached the hospital. Unable to care for myself, Renee spent the entire weekend with me. No complaining. No saying she had somewhere else to be, nothing but pure love for me and my kids. And Mandy, a mess living in Alabama, worrying about me constantly, was by my side too. Taking me to the bathroom, showering me, feeding me, and filling in the things I could not remember, those are friends. I wish you had friends like mine...they have loved you too, but you have shown them your true self.
When I write this, I wish to have the slightest hope that I am wrong, but I am not. "It is what it is", to quote you. Melonie and I always said, "it is what you make it", and I find this the most accurate of the two statements. It doesn't ever have to be "what it is", it has to be what you make of it. The worst circumstances have something to teach us, and we can make them truly valuable teaching lessons or blame, karma or life. I choose to make it what it is...happy, healthy, harmony. Nothing less.
For me, it is time for a response. As if cancer isn't enough. As if two strokes are not enough. My brain and heart still function, and when a person aligns himself with destruction, I need to remove myself, in order to protect my own dignity, but most of all, save my children.
There is a time in one's life, when he can either move in the positive direction of life, or entangle himself with vile, evil people and make decisions that have dire consequences. Some people are not happy in their own lives and find it a challenge to destroy those who have something they do not. Such has been my life, and marriage. I believed in fairy tales. I thought that my life could be so much more than that of my parents. We even made a promise to each other to be better than our parents, but one of us failed. Turns out, money talks. Turns out, a woman so hell bent on destruction, wins. And, her lap dog, thinks he wins too. Sorry folks, lies do have a way of coming out. All of the mess that was spewed trying to ruin my credibility as a person and mother, it didn't work. It only made the two of you look even dumber, and that is an understatement.
I have to write and get this outta my heart and head. This is the only way I know to heal, or to begin healing. I feel like a total failure, with a lack of seeing the obvious. My heart knows the truth, but my head refuses to believe that a person can be so destructive. Ruin his own family, to spite the nose on his face, and repay the money he has yet again, not managed.
Friend, you made a choice, that choice has consequences. To lie and manipulate children, that is cruel. To lie and manipulate the mother of your children, and use the kids, that is just twisted. What you did, you have to own up to, but you won't. A man of honor admits his mistakes when he is wrong, and takes the punishment. A man of honor, proves to his children that he is made of something, and will do everything to protect his family. You, are not that man. You are a coward. The friends you keep, they do not have the best interest of your family, but yet you continue to follow along. A follower. I am a leader, always have been and always will be. I do not follow in the shoes of people, I prepare a path to help others along the way. I am not who you say I am, but there sure is a consensus about who you are, and these people have seen you in action for a long time. Worst of all, most of those people are your flesh and blood. Young men, waiting to see their father be a true man. A young girl, who will look to her father for protection from coward men; but if you are a coward, how do you teach a young man or girl, NOT to be a coward.
I got this! The fear and heart ache, the pain of losing, the humiliation of being at the bottom with nothing. It is all lying at my feet, waiting on a response. My heart wants to yell and scream, but no one listens. I have lived in an emotionally abusive relationship for years, everyone else knows it, so why hide behind the mask? Friends know, family knew...but family did nothing to catch a bird with a broken wing, and latched onto the stories. One who is talking the loudest, is usually the one with his secrets. I have all your secrets now! You have been exposed, and only the truth will come out of my mouth. While you are off fighting a battle that you will probably win, cause stuff happens for stupid people, and people who wish to hide, well, they just take the pain.
I think you forget, my diagnosis gave me a whole new attitude on life. If you are not in it, you are out. You have chosen to lie, and there is no other way to put it. A downright lie. You always have a saying, "you can fool the fans, but not the players", that is exactly how you operate. You are a liar to the face of those you work with, trying to get ahead in this game called life. Not happy with anything that you have been blessed with: a home, beautiful children, and a job that is more than what you deserve (talking about the hand that feeds you, not a good character trait).
You have forgotten that I am strong. You have forgotten that I have people in my life that love me, and want to see my children at peace. You have seriously lost all focus on what is good and noble. Once again aligned with malice, a choice you can try to convince our children is "necessary". Enough is enough. At the end of the day, I have a beautiful life. Children that will do whatever is necessary to help provide, where you left off. And, my friends.
Friends...the strings holding me together. Letting me know I am not alone. Those who know the truth; who have known the truth. No more hiding, no more fear of what can happen to me. Use my facebook posts, use whatever you can to try and diminish me, so you look bigger. I do not look for fame and glory. I do not use other people, and lie to them to get anything! I will not hide behind fear of you any longer. You are weak and I am strong; she is weak and I am even stronger. Why? God is on my side. Ya'll have a snowball's chance in hell of being happy. I have never seen such dysfunction in my life. Going to such great lengths to avoid the truth; luckily I do not choose heaven and hell for people!
The kids and I are ok. We will be ok. The last two years were hell...I thought it had ended. After reading a "note" today, that my son wrote...it was painfully clear that this behavior has been going on a long time. Remember the "squash" incident, and how you joked about it during the divorce. That hurt me, but not because of me, because you are so arrogant and misguided, that you thought telling a joke, about a time when you hurt our children, was funny. And, the funnier thing, the text came to me by mistake. I believe in second chances; sometimes even third and fourth chances. I believed that I could love you more than the vile people who gave birth to you. Every single one of them petty and jealous. Three siblings not talking to each other, and while their mother lay dead, I witnessed one of the most ignorant interactions...and so did our kids. Hate is a strong word, but that woman has done nothing but fill our lives with chaos. She has been selfish since the beginning. She never got her way, when it came to me, and she has waited for the day to divide our family. The same woman who said we didn't need any more kids, and was a witness to another family member calling our child a ni**er! I could start twenty or more sentences with, "the same woman", but why? She is out of my life, the best part of the divorce! She is out of the childrens' lives, and quite frankly did not really make an effort to step up. Too busy with her boyfriends! Too busy with her animals, gross and smelly! She really gives new meaning to the phrase, old cat lady, with ten dogs. I hope that is where you are living, in filth. The smell of shit and animals, you deserve nothing less! I hope that every day, that you do not call or text, or spend time with your kids, that you have a miserable day. I hope you see happy families, and daddies with their babies, knowing that your chances YOU ruined.
You like to tell people the divorce was all my doing. That I up and left with another man; I am sorry but I won't let you tell my story. Now, the truth is out. You are not what you pretend to be, but I am going to sit and prepare for my life, all the while you try and lie about who you are. I won't lie. I will not hide in the shadows of guilt and humiliation any longer. I am a good person. I was a devoted wife and mother for well over 20 years, and your unhappiness is what led us to this fork in the road. Mean words, mean actions...you crossed the line. And I am done trying to figure out how I can do things differently, how I can change my behavior to accommodate yours. Done. I have life left within me, and as long as I do, I am going to be happy. I am going to fight this disease like a warrior because my children need me!
You, you keep on doing what you are doing. Your choice has been made. You have had four weeks to tell the truth; now it is not in your best interest? Yeah, well let's see how that bodes for you on the judicial side. It didn't fair really well in this house, because brick by brick, plank by plank, you are revealing who and what is important. I do NOT lie to my kids, and I do NOT use them or speak negatively about you to them, there is no need. You do all the damage yourself. I will be right here with my kids, picking up the pieces, hugging them, and loving them til my time is up. And then, every detail of my death, including the money, is in the hands of someone that I know without a doubt, I can trust and she believes and trusts in me!
I am not sure when the pain and hurt will subside, but I do know that now is the time that I have to find the strength to fight. Not physically, this is a battle that has no violence. It is a battle to live, because I want more than anything to continue to be the rock that my children depend on. I WILL, and have already exceeded being a better mother than both women "mothers" in my life! They are both out of my life, one will NEVER regain entry...one I still hold out hope, but know that is also a losing battle.
Thanks for the clarity. Thanks for the cry. Thanks for letting us all down.
Your best interest was your family, the truth would have been a whole lot more cost effective, and would have preserved the family, to try and continue to heal. The lie has cost you, a true good woman. Who knows how the lie will continue to hurt our family, but you keep it up, cause lies and deception, well...you are working with the right woman to get that accomplished. I have nothing to fight, but you will not drag my name through mud again. I will not allow you to continue to destroy our family.
Four weeks, and nothing but a defense. A lie. Using my illness as an excuse for bruises, lifting bullshit memes from my Facebook page, it all makes you look desperate. In four weeks, minimal time with your kids. The girl cries, she doesn't know the truth, one child I can protect from you and the vile woman. Cries for her daddy, not knowing that his choices are separating her from him. A child that we rescued, or hearing your side of the story, it was all my idea. That is fine, cause it makes you look even dumber. I do things that I feel God has called me to do, while this situation is much better than what her life would have been, it is less than ideal. It is not what I had chosen for her; a child would ideally need two parents, but in this case, she will clearly be loved. Her brothers love her more than their own lives, they are young men of honor. Three boys who step up to take care of their mother, and their sister, are worth more than gold. And, ya'll missed it. Missed the years that could have bonding experiences, with utter stupidity. The time that you were given with me, all gone in an instant. Promised to take care of me and be with me til the bitter end; well, preserving your dignity with non-relevant people, that choice is the one that is giving me the opportunity to see how much "love" really exists. A second stroke, and you are no where around...your own actions and choices. Saying you were sorry, would have gone a long way in these circumstances. Admitting that a problem exists, and working to resolve those issues, well you blew that! Trying to manipulate me into getting an order lifted...it doesn't work like that. First of all, I will tell the truth, not a good situation for you at all. I am done being silent. I am done acting like it doesn't happen to people like me. Anger, resentment, jealousy...not me, but definitely you. Holding onto the past, and not letting it go. Not admitting the mistakes that led up to me leaving you, but instead making a case against me!? Reading my private messages, private because my friends on the other end, they are my friends, and maybe they do not want you to know their struggles. Copying my facebook page, my pics, my anything, to try and prove I am unfaithful, or unworthy. Do you want to win? Do you want to prove those things? They do not exist, sir. I am faithful and worthy, you are digging for something that will not exist. I gave you my love and my life, and this is what I have in return? Someone who will stop at nothing to prove he is "right", when clearly he has been wrong for a long time. You win. Whoever is listening to you, either send them to the source, me or keep my name outta your mouth. I always thought winning meant you got something extraordinary, so if I continue to think like that, I am the winner! Extraordinary are my kids! I live for nothing more and nothing less. You live for drama, and chaos. Well, you got it! Drama is having anything to do with her, and chaos is the mess that you will have to deal with during your proceedings. This is your ball of wax; I asked for the truth, you refuse to admit any wrong doing, so keep it up! Your family was at stake, I think you proved tonight, we are at the back of the line. Your hands are tied, and your choices leave you where you are. Quite frankly, with the exception of the stroke, this has been a fairly peaceful four weeks. No drama, no drunk. Just the kids and I! They have stepped up to the plate to fill in, and are doing a wonderful job. Never mind our oldest thinks his life is on hold...I am kicking him out! He needs not take on your responsibility; he needs to go and live his dreams. That is what we do for our children. They have been called stupid and brainwashed, by our entire family. Who does that? What kind of father allows for that to happen, oh I know, one who told people those stories. One person who told other people that I was a bad mother, my kids do not do school work, that I am a liar and a drug and alcohol addict, and blame other people. OH NO, I do not blame other people! I am totally to blame for not realizing the damage that damaged people can do. For trusting people I knew would let me down! This is all me! I claim the award for dumb love; PollyAnna as a friend calls me! I try to find the best in people and work with that, in this current situation, I cannot find any good in the people that I am dealing with. That is sad. But, I do not have to do another thing, and can be rid of the whole mess of them and never look back. I try to do the right things as a mother, because who wants to be a single mother? Who wants to look at their kids, and admit she is at the lowest in her life, and does not know what to do. This is what happens when someone is allowed to control and manipulate another human being. We become so used to the control, and do not realize that it is really happening. It is time for my truth. It is time for me to live a peaceful life with my children, and get all drama out! There is enough sadness and ugly people in this world, I beg God to rescue my kids from this, beg Him to take away the cancer.
The other truth is, I am really sick. I do not want pity, and people say the dumbest things to someone with a progressive form of cancer. No, there is not a cure. No, I do not know when I am going to die. No, being on chemo everyday is NOT a good thing. Yes, I have my advance directives completed, yes my will is up to date now, and yes someone who is close to me, is helping me realize, I CAN DO THIS!
At this time, I sit and wait. A game of chess, who will make their next move. Well, for now, I am recuperating and getting stronger. Once PT starts, I will be on my way to walking better than ever, and if I can't, I will still get stronger! Disability is in progress, as is selling my life insurance to pay for my expenses now, so the children do not have to worry. I want my time spent loving my kids, enjoying life, and loving my friends. There is nothing more important than love, we get one chance in life. One life because we are all born dying. I have had a good life, but now is the time to step up my game, and be happier. Learn to live everyday in the moment, because your last interaction with me, could be the last one. I do not take that lightly. I want to make memories, happy ones, with people who love me and my kids. I know where they are, it is a matter of getting to them, and bringing along all this medical crap! God will provide the way, if I didn't believe in Him, I would be a crumpled mess on the floor all day.
The latest stroke left me a heap of slobbering and vomiting when we reached the hospital. Unable to care for myself, Renee spent the entire weekend with me. No complaining. No saying she had somewhere else to be, nothing but pure love for me and my kids. And Mandy, a mess living in Alabama, worrying about me constantly, was by my side too. Taking me to the bathroom, showering me, feeding me, and filling in the things I could not remember, those are friends. I wish you had friends like mine...they have loved you too, but you have shown them your true self.
When I write this, I wish to have the slightest hope that I am wrong, but I am not. "It is what it is", to quote you. Melonie and I always said, "it is what you make it", and I find this the most accurate of the two statements. It doesn't ever have to be "what it is", it has to be what you make of it. The worst circumstances have something to teach us, and we can make them truly valuable teaching lessons or blame, karma or life. I choose to make it what it is...happy, healthy, harmony. Nothing less.
Saturday, February 20, 2016
Another Day...One Week
It has been one week since TIA number 2; a slow week, and walking is coming along well.
It is hard to imagine never walking properly again, so my goal is to keep it moving every day. I will start therapy soon, three times a week. I am excited. This will allow me to get out and socialize, and get my body back in motion.
Looking forward to a beautiful Sunday.
It is hard to imagine never walking properly again, so my goal is to keep it moving every day. I will start therapy soon, three times a week. I am excited. This will allow me to get out and socialize, and get my body back in motion.
Looking forward to a beautiful Sunday.
Thursday, February 18, 2016
What I do With My Time...Photography
Sharing my photography that is for sale on EyeEm! I am so excited to find an outlet for my photographic work!
Cara Lynn McLaughlin
Cara Lynn McLaughlin
Twice is NOT so nice!
As soon as I get my heart set on writing and organizing and whatever else, my body decides it has other plans. Another TIA on Feb. 12th, 2016. Yes, that is 2 times in 3 months, that was my reaction as well.
This time the damage increased slightly; decreased movement in both legs, and I am currently using a walker to regain strength of my legs, with the right leg having more mobility problems that the other!
Using a walker; a humbling experience. The ability to walk, on my own, completely unassisted, is the goal! The week before, so much stress. Stress I do not even wish to discuss; but that lead me to the overwhelming feelings of anxiety and stress. I cannot blame my brain, it has been on overload.
We know that stress can have the capacity to bring on another episode, so why stress, right? Not so easy on this roller coaster called, life. We are hanging in there, and the kids are doing a fantastic job stepping up and doing what is necessary to help me. Another humbling, or should I say humiliating time in my life. Dependent upon my teen boys to help me relearn what I have lost, take care of my daily needs, and keep a positive attitude so that our precious little Lizzy, does not fully comprehend how stressful it really is on the rest of us.
We are doing it! With the help of some of the best friends a girl can ask for; and the prayers of the community and my friends, it is the best feeling in the world. It gives me a sense of peace that people are fighting for me, even some I do not know.
Wherever this disease takes me, I do know that I will not be alone, even when I feel hundreds of miles away from everyone! Mentally, physically, and emotionally, away from everyone. Just part of the process; dealing with cancer, it's reality.
Well, off to finish the forms that will direct everyone in what to do with me, if I am unable to speak for myself. A very prayerful time of discernment. To some it seems morbid, to me, it is a part of the acceptance process. Live like you are dying, but also live like you are alive! You have to mesh the two, especially when you leave a legacy behind.
This time the damage increased slightly; decreased movement in both legs, and I am currently using a walker to regain strength of my legs, with the right leg having more mobility problems that the other!
Using a walker; a humbling experience. The ability to walk, on my own, completely unassisted, is the goal! The week before, so much stress. Stress I do not even wish to discuss; but that lead me to the overwhelming feelings of anxiety and stress. I cannot blame my brain, it has been on overload.
We know that stress can have the capacity to bring on another episode, so why stress, right? Not so easy on this roller coaster called, life. We are hanging in there, and the kids are doing a fantastic job stepping up and doing what is necessary to help me. Another humbling, or should I say humiliating time in my life. Dependent upon my teen boys to help me relearn what I have lost, take care of my daily needs, and keep a positive attitude so that our precious little Lizzy, does not fully comprehend how stressful it really is on the rest of us.
We are doing it! With the help of some of the best friends a girl can ask for; and the prayers of the community and my friends, it is the best feeling in the world. It gives me a sense of peace that people are fighting for me, even some I do not know.
Wherever this disease takes me, I do know that I will not be alone, even when I feel hundreds of miles away from everyone! Mentally, physically, and emotionally, away from everyone. Just part of the process; dealing with cancer, it's reality.
Well, off to finish the forms that will direct everyone in what to do with me, if I am unable to speak for myself. A very prayerful time of discernment. To some it seems morbid, to me, it is a part of the acceptance process. Live like you are dying, but also live like you are alive! You have to mesh the two, especially when you leave a legacy behind.
Tuesday, January 19, 2016
Wednesday, January 13, 2016
New Treatment and Research 2016
Having a rare cancer means, the possibility of living out your life, with no cure. Sometimes this is very overwhelming for me; I have periods of despair and sadness. If I put my mind to good thoughts, and the prospect of new research and clinical trials, I leave the sadness and apprehension behind, and focus on finding one for me!
I am learning so much about this disorder, and the ways in which it has developed. For me, they have discovered one genetic defect, MTHFR c677t. I am in the process of having more genetic testing done, because it has been discovered that there are many genetic abnormalities that are associated with myeloproliferative disorders. In order to receive the best treatment option available, it is necessary to obtain more genetic testing. This is in part due to the function of the genes involved; for example, MTHFR involves the process of homocysteine. This is caused by a reduction of folate and vitamins B, in the blood. As with any form of deficit, if one part of the body is out of whack, the whole body goes with it~
I am sharing the following links to assist people in understanding the process of myeloproliferative disorders, and their treatment options and advancement. One of my favorite websites is called, Patient Power. What I have learned, you have to be an advocate for yourself, as a patient, especially when dealing with a rare disease. Not only to keep yourself informed, but for your doctor as well. Let's face it, doctors are fallible, including mine. In fact, even though I do have a fondness for my hematologist, he has a very narrow understanding of this disorder. It took nearly one year to reach a final diagnosis and in that time, he did not do all the necessary work-ups, because my disease is so rare, how could I have it?? I suggest anyone with any type of cancer, to look into Patient Power, it has helped me tremendously!
http://www.patientpower.info
For MPN's specifically, the newest updates are found here:
http://www.patientpower.info/video/ash-coverage-mpn-research-updates-from-a-panel-of-experts
I am learning so much about this disorder, and the ways in which it has developed. For me, they have discovered one genetic defect, MTHFR c677t. I am in the process of having more genetic testing done, because it has been discovered that there are many genetic abnormalities that are associated with myeloproliferative disorders. In order to receive the best treatment option available, it is necessary to obtain more genetic testing. This is in part due to the function of the genes involved; for example, MTHFR involves the process of homocysteine. This is caused by a reduction of folate and vitamins B, in the blood. As with any form of deficit, if one part of the body is out of whack, the whole body goes with it~
I am sharing the following links to assist people in understanding the process of myeloproliferative disorders, and their treatment options and advancement. One of my favorite websites is called, Patient Power. What I have learned, you have to be an advocate for yourself, as a patient, especially when dealing with a rare disease. Not only to keep yourself informed, but for your doctor as well. Let's face it, doctors are fallible, including mine. In fact, even though I do have a fondness for my hematologist, he has a very narrow understanding of this disorder. It took nearly one year to reach a final diagnosis and in that time, he did not do all the necessary work-ups, because my disease is so rare, how could I have it?? I suggest anyone with any type of cancer, to look into Patient Power, it has helped me tremendously!
http://www.patientpower.info
For MPN's specifically, the newest updates are found here:
http://www.patientpower.info/video/ash-coverage-mpn-research-updates-from-a-panel-of-experts
Cancer & Financial Assistance
I have been researching different avenues of financial resources, not only for my family, but those in need of assistance during their cancer journey. There are so many organizations and individuals that have been touched by cancer and wish to give back.
The following is a list of organizations with different objectives to assist families in need:
http://familyreach.org/family-eligibility/
http://www.themaxfoundation.org/resources/HelpfulLinks.aspx
http://www.finaid.org/scholarships/cancer.phtml
http://www.mpnresearchfoundation.org/LLS-offers-assistance-to-patients
The following is a list of organizations with different objectives to assist families in need:
http://familyreach.org/family-eligibility/
http://www.themaxfoundation.org/resources/HelpfulLinks.aspx
http://www.finaid.org/scholarships/cancer.phtml
http://www.mpnresearchfoundation.org/LLS-offers-assistance-to-patients
Thursday, January 7, 2016
What Would YOU Do?
Let me ask, what is the length that you would go to, to save your own life? I am speaking medically of course; what type of treatment option would you "dare", if it were cutting edge? Or say, "innovative treatment of the 21st century"? The quote is linked to a research article outlining a new treatment option for my disease, polycythemia vera. However, it seems an option that is daunting. It is called, parasitic oncology. Yes, parasitic! The following information is from the research article:
"This oncolytic parasitic treatment for PRV may be looked upon as an innovative treatment of the 21st century since most contemporary physicians may be unaware of it.
The Plasmodium-based treatment can be administered by intravenous injection of the cultured P. knowlesi as needed and it is non-pathogenic to humans. The parasite causes a high fever infecting RBC and, after few 24-h cycles of replication, self-terminates without any treatment" (Syeda Taliya Rizvi and Omar Bagasra, 2015).
Follow along now, this treatment won a Nobel Peace Prize in 1927 as the cure for syphilis! Fascinating! The entire process is intriguing, and intimidating! The challenge? A doctor who will actually do this, and if my body can withstand a fever, due to the clots.
DO NOT EVER SAY, I WILL NEVER DO THAT! ONE DAY, YOU COULD BE FACED WITH A DECISION, AND YOU WILL CONTEMPLATE "DOING THAT"!
"This oncolytic parasitic treatment for PRV may be looked upon as an innovative treatment of the 21st century since most contemporary physicians may be unaware of it.
The Plasmodium-based treatment can be administered by intravenous injection of the cultured P. knowlesi as needed and it is non-pathogenic to humans. The parasite causes a high fever infecting RBC and, after few 24-h cycles of replication, self-terminates without any treatment" (Syeda Taliya Rizvi and Omar Bagasra, 2015).
Follow along now, this treatment won a Nobel Peace Prize in 1927 as the cure for syphilis! Fascinating! The entire process is intriguing, and intimidating! The challenge? A doctor who will actually do this, and if my body can withstand a fever, due to the clots.
DO NOT EVER SAY, I WILL NEVER DO THAT! ONE DAY, YOU COULD BE FACED WITH A DECISION, AND YOU WILL CONTEMPLATE "DOING THAT"!
New Normal
Since my first post, I have had a rough time, medically. I suffered a cerebral accident, a mini stroke, caused by small blood clots in the left posterior brain. It was also discovered that I have some minor heart abnormalities, mitral valve regurgitation is one of them. This essentially means that when my heart pumps blood out of the left valve, some slips back in. I meet with my new cardiologist in a week to find out the final results of all the cardio work-ups!
My doctor count is currently, five. All necessary to the continuing of my existence; primary, hematologist, cardiologist, neurologist, and gynecologist. Well, there is the eye doctor and the dentist, and oral surgeon, but really, who's counting?
I was getting used to my "then" new normal, and a newer normal is now upon me. While my crafting will continue, it will be at a much slower pace. I am learning to live a very slow life. The disease progressed far enough during the "diagnosis" phase, that it has done damage to my two major organs, brain and heart. I live a daily regime of pills to basically keep me alive. I live with a series of blockages in my cerebral artery, and internal carotid arteries. Much of it makes no sense to me, all so new. I am living with a malignant blood cancer, that tries to destroy everything in its path.
This disease, cancer, has taken my life dreams and expectations. In the blink of an eye, it is all changed. The career, a human rights activist, no longer able to pursue my college education due to my lack of concentration, and memory. Criminal Justice, my love and my passion. Two classes short of my BS in Criminal Justice, now to sit at home in my pj's with 24 hour supervision. I want to scream, IT ISN'T FAIR, and I do, but somehow it does not help the situation. The tears and sadness come and go, as I wade through the waters of my newness. Laughing is my best medicine, I look for a smile every day. I do not have to look very far with the comedians in this house. They keep me alive.
It is time for me to come out of my "hiding" phase; the one where I pretend this does not exist, try to ignore the reality. This cancer, a Myeloproliferative Neoplasm called Polycythemia Vera Rubra, is rare. So rare, there are currently no cures, only medications that restore quality of life to the patient. My current treatment protocol is a chemotherapy drug called, hydroxyurea. It is working well for me clinically, symptoms are also reduced, but I am taking this on a daily basis, and it comes with its own set of issues. At this point, like I mentioned, my medications are keeping me alive. Without treatment my life expectancy would be less than a year, given my other organ dysfunctions. Even with treatment, every day is a blessing, there is no control over my body. A feeling of falling without a net!
So, how am I going to react to all this crap? Let it drain me of my hope and happiness, I think not! I have been researching new options and ideas for treatment, and will be sharing that in a later post! I am also going to launch a new advocacy campaign, to raise awareness of my disease, and raise funds to help my family pursue optional treatments that may not be covered by my insurance. As my contribution, I will give back a portion of the funds raised to a foundation that is working diligently to find a cure for myself and others!
In all of my years of advocacy, one thing I have learned, "the squeaky wheel gets the grease". It is one thing to live with this disease, it is another to sit silently and WAIT for a cure.
I CAN'T & I WON'T BE A SILENT SURVIVOR! IF GOD CHOSE ME FOR THIS DESTINY, THEN I HAVE A PURPOSE TO LIVE UP TO! I BELIEVE I CAN MAKE A DIFFERENCE FOR FUTURE GENERATIONS, IF THIS IS THE WAY, THEN I ACCEPT THE CHALLENGE!
My doctor count is currently, five. All necessary to the continuing of my existence; primary, hematologist, cardiologist, neurologist, and gynecologist. Well, there is the eye doctor and the dentist, and oral surgeon, but really, who's counting?
I was getting used to my "then" new normal, and a newer normal is now upon me. While my crafting will continue, it will be at a much slower pace. I am learning to live a very slow life. The disease progressed far enough during the "diagnosis" phase, that it has done damage to my two major organs, brain and heart. I live a daily regime of pills to basically keep me alive. I live with a series of blockages in my cerebral artery, and internal carotid arteries. Much of it makes no sense to me, all so new. I am living with a malignant blood cancer, that tries to destroy everything in its path.
This disease, cancer, has taken my life dreams and expectations. In the blink of an eye, it is all changed. The career, a human rights activist, no longer able to pursue my college education due to my lack of concentration, and memory. Criminal Justice, my love and my passion. Two classes short of my BS in Criminal Justice, now to sit at home in my pj's with 24 hour supervision. I want to scream, IT ISN'T FAIR, and I do, but somehow it does not help the situation. The tears and sadness come and go, as I wade through the waters of my newness. Laughing is my best medicine, I look for a smile every day. I do not have to look very far with the comedians in this house. They keep me alive.
It is time for me to come out of my "hiding" phase; the one where I pretend this does not exist, try to ignore the reality. This cancer, a Myeloproliferative Neoplasm called Polycythemia Vera Rubra, is rare. So rare, there are currently no cures, only medications that restore quality of life to the patient. My current treatment protocol is a chemotherapy drug called, hydroxyurea. It is working well for me clinically, symptoms are also reduced, but I am taking this on a daily basis, and it comes with its own set of issues. At this point, like I mentioned, my medications are keeping me alive. Without treatment my life expectancy would be less than a year, given my other organ dysfunctions. Even with treatment, every day is a blessing, there is no control over my body. A feeling of falling without a net!
So, how am I going to react to all this crap? Let it drain me of my hope and happiness, I think not! I have been researching new options and ideas for treatment, and will be sharing that in a later post! I am also going to launch a new advocacy campaign, to raise awareness of my disease, and raise funds to help my family pursue optional treatments that may not be covered by my insurance. As my contribution, I will give back a portion of the funds raised to a foundation that is working diligently to find a cure for myself and others!
In all of my years of advocacy, one thing I have learned, "the squeaky wheel gets the grease". It is one thing to live with this disease, it is another to sit silently and WAIT for a cure.
I CAN'T & I WON'T BE A SILENT SURVIVOR! IF GOD CHOSE ME FOR THIS DESTINY, THEN I HAVE A PURPOSE TO LIVE UP TO! I BELIEVE I CAN MAKE A DIFFERENCE FOR FUTURE GENERATIONS, IF THIS IS THE WAY, THEN I ACCEPT THE CHALLENGE!
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