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
Here I am a few days late and a dollar short. But I still wanted to respond to your honest post...felt I needed to. Jan, we don't know each other but you have been a great help to me on this site and I am so very sorry that the cancer has decided to have a party and invited friends. My CA125 is also doing the doubling dance till I don't even want to know the numbers anymore (very unlike me). I'm also doing a trial and also won't know how it is working for several months. I just pray that the avastin IS working for you and doing it's job though I know it is so hard to wait when we don't feel like we can just wait.
As for your meeting with God,,,well, don't know your particular denomination but I personally believe that God will look at YOU as you are now, today and see a woman that has loved her family, done the best she can and will read your Heart and know who you really are. I don't believe that God is punitive,,,but believe that truly mean, or evil people when they meet their maker, choose hell because looking into the eyes of God is too painfull. They see their petty, mean life reflected back at them in the bright blinding light that is our Lord.
I believe God knows and sees our soul,,, our true core. He knows your heart and your remorse for whatever, bad things you've ever done...You will not look at the floor and shuffle your feet...you will look Him in the eye and know you are finally Home with your Father, your Lord God.
But, that will NOT be happening for a while for you girl. My favorite cancer saying is from Leroy Seivers My Cancer Blog...
"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, totally worn out and proclaiming, 'WOW, WHAT A RIDE!!!'"
It is not a ride that we have chosen but I plan on showing this crappy cancer who it is dealing with...we are Mothers for God's sake, it needs to be shown who it is dealing with!
God bless you and know you are in my prayers.
Teresa
As for your meeting with God,,,well, don't know your particular denomination but I personally believe that God will look at YOU as you are now, today and see a woman that has loved her family, done the best she can and will read your Heart and know who you really are. I don't believe that God is punitive,,,but believe that truly mean, or evil people when they meet their maker, choose hell because looking into the eyes of God is too painfull. They see their petty, mean life reflected back at them in the bright blinding light that is our Lord.
I believe God knows and sees our soul,,, our true core. He knows your heart and your remorse for whatever, bad things you've ever done...You will not look at the floor and shuffle your feet...you will look Him in the eye and know you are finally Home with your Father, your Lord God.
But, that will NOT be happening for a while for you girl. My favorite cancer saying is from Leroy Seivers My Cancer Blog...
"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, totally worn out and proclaiming, 'WOW, WHAT A RIDE!!!'"
It is not a ride that we have chosen but I plan on showing this crappy cancer who it is dealing with...we are Mothers for God's sake, it needs to be shown who it is dealing with!
God bless you and know you are in my prayers.
Teresa
You are such an AMAZING person!! I hate that you are going through this...... I pray that your miracle is just around the corner!
Heidi
Heidi
Even though I am not here as much of late, I think of you and others often. You are in my thoughts and prayers. Hope the Avastin works for you, and I hear some good news on my return from Florida. TIl then live each day to its fullest, find joy in the small moments, cherish those you love, and who have loved you, and never ever give up hope.
all my love
butterfly Tc
all my love
butterfly Tc
I'm so sorry! I know how discouraged,angry but still hopeful you feel.My Mom went through that as well.Do you feel that you've learned your life lesson's? If you haven't.How can it possibly be your time? Your sister is she helping? You need all the support and care you can get.If I didn't exhaust all options for childcare for my son,taking care of my Mom,I would help you in a heartbeat! Don't give up,when the going get's tough the tough get going! I know your tough,you remind me so much of my
Mom,your character,your will to live.It may look bad now,but pray for a miracle,I know
I am for you for all the women suffering with this disease,its so frustrating,wishing so much God could implant a cure in my head for this disease!In the Bible God says in every tree,flower,plant there is a cure for everything! Where is the cure for this disease? I wish with all my heart & soul I knew,or somebody knew! Someday I could end up with this disease.Something I think about,because of my son.Please just make the most of everyday,don't give-up and most importantly PRAY! Big Hugs to you Jan! Love,Jen
Mom,your character,your will to live.It may look bad now,but pray for a miracle,I know
I am for you for all the women suffering with this disease,its so frustrating,wishing so much God could implant a cure in my head for this disease!In the Bible God says in every tree,flower,plant there is a cure for everything! Where is the cure for this disease? I wish with all my heart & soul I knew,or somebody knew! Someday I could end up with this disease.Something I think about,because of my son.Please just make the most of everyday,don't give-up and most importantly PRAY! Big Hugs to you Jan! Love,Jen
Oh Jan - I too don't have the words. From the moment I joined the forum, you have been so supportive to me and I wish I could repay you. I will always cherish the time when we all met in Springfield. Fill your days with memories.
I pray for peace and comfort for both you and Cory.
Bron
I pray for peace and comfort for both you and Cory.
Bron
Of all the lovely women here, I guess I am closest to your situation. I not only live very close to you and Cory, you've become friends with my son. I am at a loss for words, just as I am every time I hang up from the phone with you. I cannot grasp this situation. It's almost unbelieveable to me. God Bless You my friend, keep you safe from pain and fear.
Call on me any time you need ANYTHING. If I am unable to come to you, someone in my family can.
PS: I sure hope you immediately took care of the Disability issue as soon as we hung up from the phone last week.
Teresa
Call on me any time you need ANYTHING. If I am unable to come to you, someone in my family can.
PS: I sure hope you immediately took care of the Disability issue as soon as we hung up from the phone last week.
Teresa
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