Aa
Just an update
Dear Friends,
I am having the hardest time writing this. I don't know what to say or where to start. Over the last six months my CA125 has risen constantly and lately it has been jumping astronomically. 92 to 185 to 300 to 1300 to 1800 to 3065. Those aren't the exact #'s but close enough. The doxil/carbo didn't work at all and I am now on Avastin. I have had 1 & 1/2 treatments and they say it takes 3 or 4 to know if it will work. Unfortunately if it doesn’t work I only have 3 or 4 months so I am a little confused by that. Does that mean after the 3 or 4 treatments or including that time? Rhetorical question. My onc doesn't have a lot of info on how this will work for me because ins. companies have only recently started paying for Avastin for ovarian cancer. There is one woman in the office whose CA dropped by half after 3 treatments. Her cancer is not like mine though. I am still somewhat hopeful, but I have pretty much been living like I am already gone. My liver is full of tumors, I have numerous abdominal/pelvic tumors, and I am not a candidate for any of the investigational drugs they are working on now. My onc doesn't do the investigational stuff, but another group here does and they looked at my records. MD Anderson has no hope to offer and my onc says he will be more than glad to send my records wherever I want, but there just isn't anything out there that would help me and I trust that he knows. I wish he was a quack, but he is the "old gray dog", the "go to" guy and he would do anything for his patients.
I am lucky so far in that I don't have any internal parts sticking together, no kidney problems, no bowel issues etc. Those can all be really bad. If none of those things occur, than my end shouldn't be too bad. My liver will just shut down and hopefully I will just go to sleep.
There is no dignity in death, only pain and humiliation. When I had to go to the hospital @ 3 AM Monday morning, I was so weak I made Cory call an ambulance. I couldn't get down the steps to get to the car. I didn't care that I was wearing a shirt that was unbuttoned, or that I didn't have any pants on (thank goodness for cute thongs at least, although they looked better on a less bony frame). They dressed me enough to get me out of here. In the ER, and this is the first time this has happened, I had to use a bedpan. Okay, you all may be thinking that there are worse things in life, but you must have never had to do that. To me it was just a small sample of the indignities yet to come. I just hope they have me knocked out on so many pain meds that I don't know or don't care. Although I have gained weight (up to 101.4) I know that what happened to both of my mother's will happen to me...I will waste away to nothingness. It was one of my worst fears and although people assured me it wouldn't happen, they were just blowing happy smoke up my butt and I knew it.
I am sorry if this upsets anyone. I have been told, and read on here on more than one occasion that talking about dying is not uplifting, helpful, or supportive and I am not quite sure how to respond to that. It is true that it isn't any of those things, but is this site only for those who want information, a cyber hug, and a few platitudes? This is the reality of my life now (& many others) and as hard as it has been to accept that I won't have many more good days, that I can't lift anything heavier than my purse (I have always been freakishly strong for a small woman) & that Cory is just going to have to paint the spare room without me, it is what I have to accept. I will be in a lot less pain physically and emotionally if I just learn to accept my limitations. That is really hard for a Type A person though.
I am tired and in pain most of the time. I can get stuff done as long as it doesn't require thinking, or making any kind of decision, and I have to be sitting down.
I ask that you all pray, or whatever it is you do spiritually, that this Avastin works a miracle and I get another couple of years. Heck, at this point another couple of months sounds good. My onc has said that we are on a month to month basis and depending on the Avastin that could be extended or it could rapidly become day to day. Don't get me wrong, I am really hoping that this stuff works the miracle for me that it has for others, but things aren't looking great and I don’t feel well most of the time. I have a lot of stuff to get in order for Cory, the girls and for friends. That's one of the reasons I haven't been on here much. Aside from my brain usually not working as well as it is today, I am spending what good time I have sorting through papers, marking stuff for who they go to, & making Cory lists of what to do and where everything is. I am trying to fit in some fun also. I can't wait to see Lisa at the end of April, my daughter Kelly and I are planning to go to a Renaissance Fair in mid May, & we are hoping to be able to go back down to Charleston, SC or maybe New Orleans for a few days. Even though I am from the south I never knew the proper pronunciation for New Orleans until I met someone from there. It is pronounced "Naw Lins". Just a little worthless info.
I am getting a little afraid. I know that my God is waiting for me and I know that I will have an amazing eternal life, but I am not really finished with this life yet. Also, the idea of judgment day isn’t exactly something I want to rush into. I am really hoping that when I have to stand before God and account for my life that Jesus will step forward and say something like “she doesn’t have to go through all of that, she’s one of mine.” There is no excuse, reason or rationale that I could give for my poor performance in this life. I’m sure I would do a lot of looking at the ground and shuffling my feet. It is hard enough to stand in front of a parent when you are a kid and try to explain something, so I can just imagine what it must be like to have to face THE father with the train wreck that I allowed my life to be.
Well, there you have it. So many people have asked about what is going on and I hate using forum space for this, but I just couldn't write all of those notes and emails.
Thank you all for your love and support. You are constantly in my prayers and even if I am not on here much, Cory and I do pray for all of you every night. I hope that those of you going through this will find the strength to keep plowing ahead. It does get to the point where you are just to tired to fight, but I hope that point is a long, long way down the road for all of you.
Love,
Jan
I am having the hardest time writing this. I don't know what to say or where to start. Over the last six months my CA125 has risen constantly and lately it has been jumping astronomically. 92 to 185 to 300 to 1300 to 1800 to 3065. Those aren't the exact #'s but close enough. The doxil/carbo didn't work at all and I am now on Avastin. I have had 1 & 1/2 treatments and they say it takes 3 or 4 to know if it will work. Unfortunately if it doesn’t work I only have 3 or 4 months so I am a little confused by that. Does that mean after the 3 or 4 treatments or including that time? Rhetorical question. My onc doesn't have a lot of info on how this will work for me because ins. companies have only recently started paying for Avastin for ovarian cancer. There is one woman in the office whose CA dropped by half after 3 treatments. Her cancer is not like mine though. I am still somewhat hopeful, but I have pretty much been living like I am already gone. My liver is full of tumors, I have numerous abdominal/pelvic tumors, and I am not a candidate for any of the investigational drugs they are working on now. My onc doesn't do the investigational stuff, but another group here does and they looked at my records. MD Anderson has no hope to offer and my onc says he will be more than glad to send my records wherever I want, but there just isn't anything out there that would help me and I trust that he knows. I wish he was a quack, but he is the "old gray dog", the "go to" guy and he would do anything for his patients.
I am lucky so far in that I don't have any internal parts sticking together, no kidney problems, no bowel issues etc. Those can all be really bad. If none of those things occur, than my end shouldn't be too bad. My liver will just shut down and hopefully I will just go to sleep.
There is no dignity in death, only pain and humiliation. When I had to go to the hospital @ 3 AM Monday morning, I was so weak I made Cory call an ambulance. I couldn't get down the steps to get to the car. I didn't care that I was wearing a shirt that was unbuttoned, or that I didn't have any pants on (thank goodness for cute thongs at least, although they looked better on a less bony frame). They dressed me enough to get me out of here. In the ER, and this is the first time this has happened, I had to use a bedpan. Okay, you all may be thinking that there are worse things in life, but you must have never had to do that. To me it was just a small sample of the indignities yet to come. I just hope they have me knocked out on so many pain meds that I don't know or don't care. Although I have gained weight (up to 101.4) I know that what happened to both of my mother's will happen to me...I will waste away to nothingness. It was one of my worst fears and although people assured me it wouldn't happen, they were just blowing happy smoke up my butt and I knew it.
I am sorry if this upsets anyone. I have been told, and read on here on more than one occasion that talking about dying is not uplifting, helpful, or supportive and I am not quite sure how to respond to that. It is true that it isn't any of those things, but is this site only for those who want information, a cyber hug, and a few platitudes? This is the reality of my life now (& many others) and as hard as it has been to accept that I won't have many more good days, that I can't lift anything heavier than my purse (I have always been freakishly strong for a small woman) & that Cory is just going to have to paint the spare room without me, it is what I have to accept. I will be in a lot less pain physically and emotionally if I just learn to accept my limitations. That is really hard for a Type A person though.
I am tired and in pain most of the time. I can get stuff done as long as it doesn't require thinking, or making any kind of decision, and I have to be sitting down.
I ask that you all pray, or whatever it is you do spiritually, that this Avastin works a miracle and I get another couple of years. Heck, at this point another couple of months sounds good. My onc has said that we are on a month to month basis and depending on the Avastin that could be extended or it could rapidly become day to day. Don't get me wrong, I am really hoping that this stuff works the miracle for me that it has for others, but things aren't looking great and I don’t feel well most of the time. I have a lot of stuff to get in order for Cory, the girls and for friends. That's one of the reasons I haven't been on here much. Aside from my brain usually not working as well as it is today, I am spending what good time I have sorting through papers, marking stuff for who they go to, & making Cory lists of what to do and where everything is. I am trying to fit in some fun also. I can't wait to see Lisa at the end of April, my daughter Kelly and I are planning to go to a Renaissance Fair in mid May, & we are hoping to be able to go back down to Charleston, SC or maybe New Orleans for a few days. Even though I am from the south I never knew the proper pronunciation for New Orleans until I met someone from there. It is pronounced "Naw Lins". Just a little worthless info.
I am getting a little afraid. I know that my God is waiting for me and I know that I will have an amazing eternal life, but I am not really finished with this life yet. Also, the idea of judgment day isn’t exactly something I want to rush into. I am really hoping that when I have to stand before God and account for my life that Jesus will step forward and say something like “she doesn’t have to go through all of that, she’s one of mine.” There is no excuse, reason or rationale that I could give for my poor performance in this life. I’m sure I would do a lot of looking at the ground and shuffling my feet. It is hard enough to stand in front of a parent when you are a kid and try to explain something, so I can just imagine what it must be like to have to face THE father with the train wreck that I allowed my life to be.
Well, there you have it. So many people have asked about what is going on and I hate using forum space for this, but I just couldn't write all of those notes and emails.
Thank you all for your love and support. You are constantly in my prayers and even if I am not on here much, Cory and I do pray for all of you every night. I hope that those of you going through this will find the strength to keep plowing ahead. It does get to the point where you are just to tired to fight, but I hope that point is a long, long way down the road for all of you.
Love,
Jan
Jan, I just want you to know that i am thinking of you and praying that God grants you your wish. It is so hard to read this, but I want to say thank you for sharing it with us. I, like a lot of the others, don't really know what to say, You are an awesome woman, and I feel privilaged (sp) to know you. As hard as it is, keep fighting and praying. You are an amazing woman!! Love, Kasie
You have touched so many lives and helped so many people that when your time does come and you meet your Father I think his words to you will be "Well done, good and faithful servant. Well done." I'm continuing to pray for you and Cory, as well as your family, and I hope the Avastin is your miracle. Your honest and willingness to share your journey, thoughts and feelings have been an inspiration and you are greatly loved and appreciated. Love, Chris P
Hey Sis,
It ain't over till the fat lady sings...... I know you won't just give up. It's not in your nature. BTW, I want that room done by the time I get there.
Love you snotty, obnoxious bratty little sister, Flick
It ain't over till the fat lady sings...... I know you won't just give up. It's not in your nature. BTW, I want that room done by the time I get there.
Love you snotty, obnoxious bratty little sister, Flick
Jan,
I wish I knew the right words to say. I can only say first, that I hope the Avastin does wonders for you! I will pray that it does. Second, thank you so much for posting here as I have been thinking of you constantly and although, it is so very hard to read, it is also a blessing to hear from you. When you stand before God, I am confident he will be pleased with the woman that you are, the grace you show, the love, caring and comfort you have brought to so many here on the forum, and I am sure in your life as well. Thank you so much for being a friend. Enjoy those trips you have planned and I will be praying for the Avastin to do it's job, for comfort and healing. Love you! Colleen
I wish I knew the right words to say. I can only say first, that I hope the Avastin does wonders for you! I will pray that it does. Second, thank you so much for posting here as I have been thinking of you constantly and although, it is so very hard to read, it is also a blessing to hear from you. When you stand before God, I am confident he will be pleased with the woman that you are, the grace you show, the love, caring and comfort you have brought to so many here on the forum, and I am sure in your life as well. Thank you so much for being a friend. Enjoy those trips you have planned and I will be praying for the Avastin to do it's job, for comfort and healing. Love you! Colleen
How hard the words come to me now, first things first though, as a woman that has given many bed pans, I always tried to warn them up a bit first, I thought it was great the one hospital I worked at had a warmer built in the utility room, funny thoughts come back to me right now, knowing how skinney you are , no problem, you should have seen some of the "fat" ladies I had to deal with, they always made a mess. Bet you never complained about those messy diapers you did for your mom, time does seen to run in circles some times. None of us know how long we have on this earth, thank God for that, or we would never get anything done. You have lived your life so far in the best way you knew how, no regrets, just memories, what is past is done with now. Most of us have things in our past that we would do different now, but we can't. Death is just one of the things that all of us face, none of us want it, but we know we cannot avoid it. Kinda like the dentist. I won't say that death was easy for Leslee, it wasn't because she wanted to live, we all do. But if my prayers had been answered I would have gone for her. At my age I know I am on the downward slope, but I refuse to sit around and worry about it, I will do what you are doing, take the chance that something will make me live at least one more day. The Avastin might just be that chance hun, thinking positive is hard for you right now, you have a mind set of despire. I am so glad you are making some plans for fun, those are positive thoughts. You are not a coward, you are a hero, it takes guts to face this damn disease and you have done it in every way you can. I know you get mad as hell because you are faced with all the ramifications of a life with cancer, so feel free to post anything you want, and don't worry about God, let him do all the worrying. I just want you to know that I feel very privileged to have gotten to know you through this forum, you are a friend. Marty
Dear Jan,
I so wish I had some wise and wonderful words that I could add to the above but I can only agree with everything written before me. . I've only known you for a little over a year but I know this; you are a very strong, brave, giving soul. And ,if there's a miracle to be had, you will have it ! .. If all it will take is positive thoughts and prayers, then you are going to be receiving that miracle.. I, too, will be praying for you. Thank you for letting us into your life.
Love,
Sandy
I so wish I had some wise and wonderful words that I could add to the above but I can only agree with everything written before me. . I've only known you for a little over a year but I know this; you are a very strong, brave, giving soul. And ,if there's a miracle to be had, you will have it ! .. If all it will take is positive thoughts and prayers, then you are going to be receiving that miracle.. I, too, will be praying for you. Thank you for letting us into your life.
Love,
Sandy
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