after going through hundreds of agents and either being forced to pay a high premium or not getting insured, I've decided to go to a conference in Michigan and learn what I can about living after cancer.
http://www.mibcc.org/events/current/cancer-rights-conference
I believe my hospital is the absolute best hospital in the world in saving people with cancer. It's absolutely one of the best and worse experiences of my life going through this illness. Cancer Treatments of America gave me tremendous opportunities to survive.
The major pitfalls of my hospital is the after care. I realize there isn't alot of money left over after being treated from cancer and what is left over doesn't pay for much. SO there isn't alot of development for after care.
What do you do after cancer? Most people would say "WHAT THE HELL IS YOUR PROBLEM, you should be grateful that you survived!" Well, I am grateful but, I am still human and I have alot of issues from recovering from cancer.
My major issue is insurance. I am very grateful that I currently have one of the best insurances out there and have a husband who can afford the insurance as every year the premiums raises. It sucks that there is no alternative and that I am forced to use this particular insurance. It makes me wonder, what if I wasn't so fortunate?
What about those who are less fortunate about maintaining or having insurance beyond their treatment. There is no legislative protection to those who have cancer, there are no health insurance companies who are willing to insure a post cancer victim and those who are willing to gouge people who are just trying to manage their lives and somehow piece it back together.
Somehow there has to be another way...
Tuesday, October 18, 2011
Wednesday, October 12, 2011
Insurance after cancer?
So, now that I am in my fourth year of the life altering even of cancer, I am finding that I have to search for new health insurance. This has proven to be a miserable experience. Insurance agents lie about what they can do and what they can't do to get your information why? Because my husband, who is in wonderful health is more insurable than me. Everyone says Obamacare is supposed to help with this dilemma but, it's not. I've been promised time and time again that if I get this piece of information that they should approve me and then they don't but, suddenly Robert has insurance weather he wants it or not, usually not. We make it clear to the insurance folks we don't want the insurance if I'm not apart of it and somehow they force him to have insurance. So it becomes a long drawn out process to get our money back.
Tuesday, October 11, 2011
Long time no Blog
I've been living my life one day at a time with happiness and great joy. So, it's hard for me to spend the time to blog. SO, what has been happening in my life? There are so many things I'm not sure where to begin...
I'll start by saying, that I am cancer free. In May of 2009 I was told that I am officially in remission. I don't think people tell you when you go into remission that even though you're technically cancer free, you have alot of rebuilding to do, health wise. I found it amazing while you are in your most suffering stages of struggle alot of people come into your life. It's interesting and then when your cured suddenly they don't know who you are.
Maybe it's me, perhaps something or somewhere with Chemo brain caused me to forget something I said and thus cause people who once called me a friend hate me. Who knows, they are missed, not forgotten, and am appreciative of their support during my difficult time.
Over the past few years my life has done a 180, and am a happier person as a result. I found love in a place I thought I would never find love, he's my exact opposite yet, somehow we find ways not only to tolerate each other but spend 100's of hours together without killing each other. He makes me happy and is very supportive of me. I love the fact that I have him in my life taking care of me.
After remission news: This is the difficult part of my life. When I went into remission, I thought I would bounce right back into life. I was sorely wrong. Apparently Chemo takes 2 or more years to flush out of your body, so when people say CHEMO is so horrible for your body, this is what they meant. Though I don't have the same horrific immediate side effects of chemo I do have the underlinings of it. What do I mean...well, Chemo brain for instance...I have a very difficult time remembering things and sometimes get lost. It's really kinda frightening. Being weak, tired, and sick all the time. My brain is definitely alot slower than pre cancer times.
I sometimes think it's worse to be in remission and have the symptoms of Chemo. People don't realize your sick. Everyone in my life (aside from my family) are post cancer treatments and know nothing about who I was before I was sick. Being sick all the time is very difficult for them to understand what's going on with me, why I behave the way I behave, and why I get so cranky sometimes. I realize that it's me more often than anyone else and I try to curb my crankiness but there is only so much one can do to stop it before it comes out.
So, I''m taking my time learning how to deal with my weaknesses, trying to rebuild me both physically, mentally, and cognitively. I find myself not interested in being social or rebuilding my social capabilities...I don't really understand why nor do I understand why it doesn't bother me. Perhaps I've been hurt too many times.
I'll start by saying, that I am cancer free. In May of 2009 I was told that I am officially in remission. I don't think people tell you when you go into remission that even though you're technically cancer free, you have alot of rebuilding to do, health wise. I found it amazing while you are in your most suffering stages of struggle alot of people come into your life. It's interesting and then when your cured suddenly they don't know who you are.
Maybe it's me, perhaps something or somewhere with Chemo brain caused me to forget something I said and thus cause people who once called me a friend hate me. Who knows, they are missed, not forgotten, and am appreciative of their support during my difficult time.
Over the past few years my life has done a 180, and am a happier person as a result. I found love in a place I thought I would never find love, he's my exact opposite yet, somehow we find ways not only to tolerate each other but spend 100's of hours together without killing each other. He makes me happy and is very supportive of me. I love the fact that I have him in my life taking care of me.
After remission news: This is the difficult part of my life. When I went into remission, I thought I would bounce right back into life. I was sorely wrong. Apparently Chemo takes 2 or more years to flush out of your body, so when people say CHEMO is so horrible for your body, this is what they meant. Though I don't have the same horrific immediate side effects of chemo I do have the underlinings of it. What do I mean...well, Chemo brain for instance...I have a very difficult time remembering things and sometimes get lost. It's really kinda frightening. Being weak, tired, and sick all the time. My brain is definitely alot slower than pre cancer times.
I sometimes think it's worse to be in remission and have the symptoms of Chemo. People don't realize your sick. Everyone in my life (aside from my family) are post cancer treatments and know nothing about who I was before I was sick. Being sick all the time is very difficult for them to understand what's going on with me, why I behave the way I behave, and why I get so cranky sometimes. I realize that it's me more often than anyone else and I try to curb my crankiness but there is only so much one can do to stop it before it comes out.
So, I''m taking my time learning how to deal with my weaknesses, trying to rebuild me both physically, mentally, and cognitively. I find myself not interested in being social or rebuilding my social capabilities...I don't really understand why nor do I understand why it doesn't bother me. Perhaps I've been hurt too many times.
Monday, November 16, 2009
Depression
For all accounts I should be happy and in good spirits but for some reason I can't seem to see things as happy. I'm desperately trying to find reasons to smile, to feel, to be happy...but I can't seem to pull myself out of it. I have love, family, purpose however, I feel really empty. I wonder if this has something to do with my medication or with the after effects of cancer recovery.
The anniversary of my mother's death is coming up, Robert, thinks that perhaps that's one of the reasons why I'm so sad. But for the last 17 years since my mother has past I have been able to reconcile with the thought of her death when it has been brought to my attention. Looking at the number 17 years...wow, I can't believe it's been that long since I last saw my mother alive...Although I miss her and am sad without her...I'm ok with her not being here. It's always difficult to not have her around however, I don't think it's the root.
I've let the hospital know about my depression along with a whole slue of issues I have and so I'll have an appointment with them and see what they have to say. In the mean time I'll continue living feeling empty.
The anniversary of my mother's death is coming up, Robert, thinks that perhaps that's one of the reasons why I'm so sad. But for the last 17 years since my mother has past I have been able to reconcile with the thought of her death when it has been brought to my attention. Looking at the number 17 years...wow, I can't believe it's been that long since I last saw my mother alive...Although I miss her and am sad without her...I'm ok with her not being here. It's always difficult to not have her around however, I don't think it's the root.
I've let the hospital know about my depression along with a whole slue of issues I have and so I'll have an appointment with them and see what they have to say. In the mean time I'll continue living feeling empty.
Wednesday, October 14, 2009
Health issues after treatment
Well after all the pain and suffering one goes through you would think that it's over...it's really not true. It has been about a year after my last chemo and almost a year after my last radiation treatment and I am shocked to see that I have alot of the same issues I had while on treatment. I'm no this new drug called Tamoxifin. Its supposed to prevent the hormone estrogen from reentering any remaining cancer cells in my body which is the vehicle that spreads my cancer.
What I'm finding out is that I'm feeling sicker that when i was on Chemo without the fatigue, the constant fear of dying, or the fear of my white blood count dropping. I suppose that's a good thing. I gotta say I don't like feeling sick all the time. I want to be strong and be able to move around without feeling sick. Without feeling tired moments after i wake up from a night's slumber. THe nausea sucks. Memory loss it heightened quite a bit and It freaks me out even more so than before which makes me sad cause i think it makes the situation worse since I'm trying to study for an exam and everything that i studied the night before has gone away making me have to re study everything as if i had never looked at this stuff before. Very frustrating.
AS my hair started growing back I am now noticing that I'm losing it all over again. this time I think it's worse. CLumps of hair is coming out and I don't know if i should shave it off to spare me from the pain of going through hair loss as i did when I first started loosing hair or if I should hold out and hope that the hairloss will end before i lose it all.
What I'm finding out is that I'm feeling sicker that when i was on Chemo without the fatigue, the constant fear of dying, or the fear of my white blood count dropping. I suppose that's a good thing. I gotta say I don't like feeling sick all the time. I want to be strong and be able to move around without feeling sick. Without feeling tired moments after i wake up from a night's slumber. THe nausea sucks. Memory loss it heightened quite a bit and It freaks me out even more so than before which makes me sad cause i think it makes the situation worse since I'm trying to study for an exam and everything that i studied the night before has gone away making me have to re study everything as if i had never looked at this stuff before. Very frustrating.
AS my hair started growing back I am now noticing that I'm losing it all over again. this time I think it's worse. CLumps of hair is coming out and I don't know if i should shave it off to spare me from the pain of going through hair loss as i did when I first started loosing hair or if I should hold out and hope that the hairloss will end before i lose it all.
Tuesday, October 6, 2009
Life after Cancer
There are alot of things that I want to say but nothing I really want to express. This journey has taught me alot about life, love, friends, family, and loved ones. People can't handle certain things, like the news of cancer, so often they hide from talking to you until you're done with that portion of your life. Suddenly reappear with sweetness and happiness that you came through ok. I found that more out recently than not.
I have alot of friends who have reentered into my life that knew about my cancer that suddenly reappeared after I'm ok. I'm not angry with them, disappointed, or hurt by this phenomenon just making a note of it. I can understand their point of view and really how do you act around a person to whom you know and care about might die? Thing is most people don't know me...I am a strong person and refused to let this cancer get the better of me.
As I was going through this journey I noticed other people around me who got cancer...Not people I knew personally but celebrities. Beautiful people who seemed to be just as determined and as strong as I was, some made it, some didn't, while others are still fighting. I am surprised to see how much thier body's changed and not changed, how they are able to smile as I did. I wonder if they experienced the same battles I did while I was alone. I wonder.
Today I'm healthish. I am still licking my wounds from the torment Chemo bombarded me with, touching the tenderness and, oddly enough, numbness of the scars surgery left behind, and poking the scabs of the burns radiation caused on my wounds. I'm happy and content for all God has given me where I have found a new sense of renewal and spirituality that I had lost as a young adult. Rebuilding my life, my love, and my serenity is something that will take some time. Cancer is a horrible thing that no one should go through and very little people understand.
Through this journey I have lost a vast many things however, the hardest is a friendship that I never thought I would lose. This person is someone who stood by me through the hardest portions of my journey and because of a misunderstanding on my part she had decided to end our friendship. Why not talk to her about it? Well, if anyone knows her like I do, talking to her would inflame the situation more for she is a person who can not accept an apology. Taking an signs of weakness is a way in to hurt you further. Up until this insistence she would not do it to me, for reasons I'm uncertain but, perhaps she felt sorry for me however, I have seen her do it to other people she loved and it's sad. As often as I listened to her complain about those people, I tried telling her to forgive but, she would have nothing of it.
Really, it's not worth the effort for me to talk to her, I understand the outcome. When she is ready to talk to me I'll sincerely apologize again. I will miss her as I do everyday. I realize that she is spreading rumors about me as she did with the other loved ones she was angry with but, really at this point in my life I really just need to focus on rebuilding my life and being happy.
Life after treatment is a little daunting. For the past two years the focus has been fixing yourself, surviving, and try to maintain a stress free lifestyle. All the while inside my brain I have waves of confusion running about. Screams and loudness that was non nonsensical to which no one but me could ever hear. I knew it was all in my head, and it was terrifying really. The loneliness of going through this journey was mind boggling and at the same time I just wanted to be alone. I think what it was was that I didn't want to be alone without a partner. Someone that I can speak to on a regular basis and who wanted me to be better for their own selfish reasons. I'm not sure if that makes any sense. Near the tail end of my illness I met a person, named Robert. He met me when I had no hair.
Shockingly enough our meeting was serendipitous. There was a series of bizarre events that brought us together that only a whimsical, highly imaginative, creative, romantic novelist could write. Any other time before or after our first meeting we would not be together today.
I have alot of friends who have reentered into my life that knew about my cancer that suddenly reappeared after I'm ok. I'm not angry with them, disappointed, or hurt by this phenomenon just making a note of it. I can understand their point of view and really how do you act around a person to whom you know and care about might die? Thing is most people don't know me...I am a strong person and refused to let this cancer get the better of me.
As I was going through this journey I noticed other people around me who got cancer...Not people I knew personally but celebrities. Beautiful people who seemed to be just as determined and as strong as I was, some made it, some didn't, while others are still fighting. I am surprised to see how much thier body's changed and not changed, how they are able to smile as I did. I wonder if they experienced the same battles I did while I was alone. I wonder.
Today I'm healthish. I am still licking my wounds from the torment Chemo bombarded me with, touching the tenderness and, oddly enough, numbness of the scars surgery left behind, and poking the scabs of the burns radiation caused on my wounds. I'm happy and content for all God has given me where I have found a new sense of renewal and spirituality that I had lost as a young adult. Rebuilding my life, my love, and my serenity is something that will take some time. Cancer is a horrible thing that no one should go through and very little people understand.
Through this journey I have lost a vast many things however, the hardest is a friendship that I never thought I would lose. This person is someone who stood by me through the hardest portions of my journey and because of a misunderstanding on my part she had decided to end our friendship. Why not talk to her about it? Well, if anyone knows her like I do, talking to her would inflame the situation more for she is a person who can not accept an apology. Taking an signs of weakness is a way in to hurt you further. Up until this insistence she would not do it to me, for reasons I'm uncertain but, perhaps she felt sorry for me however, I have seen her do it to other people she loved and it's sad. As often as I listened to her complain about those people, I tried telling her to forgive but, she would have nothing of it.
Really, it's not worth the effort for me to talk to her, I understand the outcome. When she is ready to talk to me I'll sincerely apologize again. I will miss her as I do everyday. I realize that she is spreading rumors about me as she did with the other loved ones she was angry with but, really at this point in my life I really just need to focus on rebuilding my life and being happy.
Life after treatment is a little daunting. For the past two years the focus has been fixing yourself, surviving, and try to maintain a stress free lifestyle. All the while inside my brain I have waves of confusion running about. Screams and loudness that was non nonsensical to which no one but me could ever hear. I knew it was all in my head, and it was terrifying really. The loneliness of going through this journey was mind boggling and at the same time I just wanted to be alone. I think what it was was that I didn't want to be alone without a partner. Someone that I can speak to on a regular basis and who wanted me to be better for their own selfish reasons. I'm not sure if that makes any sense. Near the tail end of my illness I met a person, named Robert. He met me when I had no hair.
Shockingly enough our meeting was serendipitous. There was a series of bizarre events that brought us together that only a whimsical, highly imaginative, creative, romantic novelist could write. Any other time before or after our first meeting we would not be together today.
Sunday, May 31, 2009
Cancer Free
Wow, it's been a long time since I posted anything and since then I've gone through alot of changes. I've gone to my last Chemotherapy with a surprise...My doctor told me I was CANCER FREE officially. I think I was more shocked with that than finding out that I had cancer. It's been a rough journey...one that I don't wish on my worse enemy and though I have learn alot, met a ton of people, and found who I was during this process I have to say I don't ever want to repeat this but, am oddly glad that I had this experience.
There are things about cancer that I haven't shared but, for the most part I've disclosed everything. and the reason why I haven't disclosed everything is because I literally forgot, too embarrassed (although I'm not sure after what I've written why), or I felt I've complained enough.
Over the past 4 months I've made some life altering decisions, I've decided to let go of my husband and we've decided together to move on and move away from one another. So, I am within days of a final divorce settlement. I think that out of everything has been the most difficult and the most relieving decisions I had to take. I've also moved out of my dad's house and began living my life again. I'm struggling alot but, I'm living and some how paying my bills (although not 100% on time). I've left my non for profit gig due to time constraints and lack of pay.
I've finished my book but am terrified to publish it. Why? Cause it's one of those projects that is a journal of a painful aspect of my life and well I suppose I'm afraid of failing for one and for two well I don't think there is a two.
I've also found out the effects of chemo after chemo...serious memory loss. I'm still having problems remembering things. perhaps it's school and the 4 businesses that are causing the memory loss but somehow I doubt it. I'm still very tired some days where all I can do is just sleep. I often feel sick, nauseated sick I try not to let anyone know but, my partner Robert sees me day in and day out so when I am ill it's hard for him not to notice.
Robert knows what I've gone through over the past year and half. He invited me to move in with him as a roommate and then we became business partners. He realized the conditions I was living in that caused me to be depressed and sad all the time. Don't get me wrong, my family was very supportive of me while I was at home and took care of me while I was sick but, as you all know they have a funny way of showing their love for me.
I had come home one day from Chemo and Robert came to visit me. I was long over due to our meeting and he asked me what happened. I told him Caryn abandoned me at Chemo. Shocked and appalled he looked at me and asked, what do you mean abandoned you?!
After Caryn's last explosive episode, I never really trusted her again. I had asked her to go to anger management and she agreed, needless to say she didn't go. since then I've seen her antics and seen that she has, unrightly, taken her anger out on people around her. So she had not been really allowed to come with me to the hospital for quite some time. My first Chemo in January was the first one in a while since I invited her to come with me (plus she sorta asked to come along). The drive up there was pleasant and we had a strained but, normal conversation. I wanted to ask her, had she gone and looked into anger management like she had promised me 9 months earlier? When I did a new explosion happened.
Luckily I we were close to the hospital and she dropped me off. It was more like kicking me out of the car, grabbing my wallet, and she knew my phone was dying and told me to find myself a way back home. As I was walking towards the hospital through the parking lot she tried to run me over. I had enough juice in my phone to make one phone call and that was my best friend mike where he, not having a car, took the train up all the way from Chicago to Zion to give me money to get home.
That night Robert came over, I had told him what had happened and he moved me into his home. We're helping each other survive right now but I think he's helping me more financially. But, I am much more happier now than I was when I was at my dad's house. Although I am struggling right now, it's a fairly stress free environment for me. I'm still struggling with my memory and it's really not your typical memory loss.
For instance, things that I've been spelling most of my life like resturant I can't understand why it's spelt restaurant. Or enviropment, environment. Thank GOD for spell check. I seriously don't know how I made it through this past semester. I seriously don't remember much of any of the classes or anything I read. So I'm going over some of the notes and re-reading some of the texts this summer just to remember and rebuild my brain. I feel like the past 3 years of my life has gone to waste. simple things that I LOVE like Australopithecus I'm having a hard time remembering what the hell that is and I've just spent the last 3 years of my life learning, living, breathing physical anthropology (ok a little extreme but you get the idea) and for the life of me I have no idea what how it relates to what I've learnt. I am thinking that I'm going to go back to school and audit some classes with my favorite teachers so I can rebuild my brain...
Now I'm happy, losing weight, rebuilding my finances, mind and body...My spirit is intact and healthy. I am starting a NEW journey through recovery. It's wonderful to be cancer free.
There are things about cancer that I haven't shared but, for the most part I've disclosed everything. and the reason why I haven't disclosed everything is because I literally forgot, too embarrassed (although I'm not sure after what I've written why), or I felt I've complained enough.
Over the past 4 months I've made some life altering decisions, I've decided to let go of my husband and we've decided together to move on and move away from one another. So, I am within days of a final divorce settlement. I think that out of everything has been the most difficult and the most relieving decisions I had to take. I've also moved out of my dad's house and began living my life again. I'm struggling alot but, I'm living and some how paying my bills (although not 100% on time). I've left my non for profit gig due to time constraints and lack of pay.
I've finished my book but am terrified to publish it. Why? Cause it's one of those projects that is a journal of a painful aspect of my life and well I suppose I'm afraid of failing for one and for two well I don't think there is a two.
I've also found out the effects of chemo after chemo...serious memory loss. I'm still having problems remembering things. perhaps it's school and the 4 businesses that are causing the memory loss but somehow I doubt it. I'm still very tired some days where all I can do is just sleep. I often feel sick, nauseated sick I try not to let anyone know but, my partner Robert sees me day in and day out so when I am ill it's hard for him not to notice.
Robert knows what I've gone through over the past year and half. He invited me to move in with him as a roommate and then we became business partners. He realized the conditions I was living in that caused me to be depressed and sad all the time. Don't get me wrong, my family was very supportive of me while I was at home and took care of me while I was sick but, as you all know they have a funny way of showing their love for me.
I had come home one day from Chemo and Robert came to visit me. I was long over due to our meeting and he asked me what happened. I told him Caryn abandoned me at Chemo. Shocked and appalled he looked at me and asked, what do you mean abandoned you?!
After Caryn's last explosive episode, I never really trusted her again. I had asked her to go to anger management and she agreed, needless to say she didn't go. since then I've seen her antics and seen that she has, unrightly, taken her anger out on people around her. So she had not been really allowed to come with me to the hospital for quite some time. My first Chemo in January was the first one in a while since I invited her to come with me (plus she sorta asked to come along). The drive up there was pleasant and we had a strained but, normal conversation. I wanted to ask her, had she gone and looked into anger management like she had promised me 9 months earlier? When I did a new explosion happened.
Luckily I we were close to the hospital and she dropped me off. It was more like kicking me out of the car, grabbing my wallet, and she knew my phone was dying and told me to find myself a way back home. As I was walking towards the hospital through the parking lot she tried to run me over. I had enough juice in my phone to make one phone call and that was my best friend mike where he, not having a car, took the train up all the way from Chicago to Zion to give me money to get home.
That night Robert came over, I had told him what had happened and he moved me into his home. We're helping each other survive right now but I think he's helping me more financially. But, I am much more happier now than I was when I was at my dad's house. Although I am struggling right now, it's a fairly stress free environment for me. I'm still struggling with my memory and it's really not your typical memory loss.
For instance, things that I've been spelling most of my life like resturant I can't understand why it's spelt restaurant. Or enviropment, environment. Thank GOD for spell check. I seriously don't know how I made it through this past semester. I seriously don't remember much of any of the classes or anything I read. So I'm going over some of the notes and re-reading some of the texts this summer just to remember and rebuild my brain. I feel like the past 3 years of my life has gone to waste. simple things that I LOVE like Australopithecus I'm having a hard time remembering what the hell that is and I've just spent the last 3 years of my life learning, living, breathing physical anthropology (ok a little extreme but you get the idea) and for the life of me I have no idea what how it relates to what I've learnt. I am thinking that I'm going to go back to school and audit some classes with my favorite teachers so I can rebuild my brain...
Now I'm happy, losing weight, rebuilding my finances, mind and body...My spirit is intact and healthy. I am starting a NEW journey through recovery. It's wonderful to be cancer free.
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