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

[TrudieC]

Jan, this is so very much the place for this kind of posting.  How else can we support you, pray for you, and if the Avastin doesn't work, then be there for you in your last days.  I would rather know the reality as it happens than to hear bad news for which I am not prepared.  I know that just writing this posting took so much effort and time for you and am so appreciative of that.  Your friendship has meant the world to me and I will continue to fervently pray for you, for relief from your pain, for success with the Avastin, and for you to have the energy to continue to fight this.

Much love, Trudie

[yrrek]

Oh Jan, Wow, I just want to thank you for writing and sharing.  You are strong, you are courageous and I think you should plan on painting the spare bedroom even if you put in a couple strokes here and there, giving direction.  I am praying for you and Cory.  I am praying for dignity, I am praying for sunshine in your days.
Love, Kerry

[Searching48507]

I will continue to pray for you.  I have always considered you a pillar of strength, wisdom, and abilities.  

God Bless,

Karen

[marie3B]

I can't think of any words that sound right.  I will continue to pray that your Avastin works for you.  I tried so hard to get on it, now I may not be able to continue on it.  I have been having some horrible pain in my stomach / chest. I hate this disease that is attacking you, me and so many of our friends.  I hate it for taking our mothers.  When I think of you, I see you fussing over those plants at the Botanical Gardens on our Springfield trip.  You will not leave my thoughts and prayers.  I don't need to tell you to stay strong.  I know you will.  Love, Marie

[nyc lady]

Jan - Thank you for sharing your journey with us and allowing us to be part of it.  Sending lots of positive thoughts to you and Cory.  Maybe the Avastin will be your miracle.

Love,
Pam

[jane65]

Dear Jan,
Please don't ever apologize for coming to this forum to express your feelings, and pain. You've been here to help and support us, now it's your turn to get that love and support back.
I'm sending prayers, and hope that the Avastin wii work for you.

My oncologist has 4 ladies with OVCA on Avastin and he told me that they are doing exceptionally well. I truly hope you join that club!

Stay hopeful, best wishes.
Jane

[ladyjogger31]

Dont ever give up, I will be praying that the Avastin does the trick for you. Sending positive thoughts your way.
Love, Terry

[henning]

Hello Jan

I am new to this forum-I am waiting for dr appt all that.  First off Jan, "there is no dignity in death, only pain and humiliation" did you make that up?  Becuz there is just no truth to that, a person who is dying or dies from a terminal illness, old age or whatever the case is no less dignitifed or should ever feel humiliatied for it. I lost my brother-in-law to cancer last yr. he changed had white hair compared to this black hair and was really thin- and I'm not saying this becuz he was a guy- but I really dont think he was laying there saying I am undignitifed and I am humiliated, pain yes he was in alot but they gave him the pain meds. Its the person inside that makes a persons beauty shine.

I have never met you, for all I know you could be 300lbs, bad hair day and use perfume instead of a daily shower.LOL. I dont see that (thank God-and if I had to smell that I would be on my knees thanking God LOL)  I see a very strong brave woman who is there to help others with what ever wisdom you have and you give it freely. Thats what I see.

Oh and Jan, the only smoke I blow-up is in my husbands butt and that is usually for the credit card.

We dont get to chose what we want not when it comes to God. I think we dont learn that at birth and up.  Its not like our life we can choose-beans or peas  black or white  if I do will he still love me- get the picture? We grow up thinking we will always have those choices and we dont not when it comes to the Big Picture. We are all going to die even me I dont now how or when or even if it is going to be quick or slow I dont have that choice no one does.

I beleive in my heart that you are one of Jesus's own becuz you have helped so many that came to this site looking for answers help and comfort. And you gave them that from your heart and you have helped those who asked and you did it without expecting anything in return.  That is what counts with Him, not the preacher making millions for a eternal gift that is free- he is the one who should be worried-not you.

And Jan, who cares what you did in your past I dont and I dont think anyone else here does.  For all I now you could have been the " towns freebie just buy me a drink" and you could have been blowing smoke....(wont go there, I like this forum,I dont want to be kicked off )LOL. It matters what you do in the present that counts. And you could not see how posting this (what is happening to you) does help, does comfort and no a person dying no matter what is not quite uplifting-but you have helped by sharing your journey with other women who are her and those who will be brought to this site.  You are comforting those in your courage you show in your journey and no dying or death is not uplifting but it is part of life. And why shouldnt you be able to post what you are dealing with- I would bet, you have carried many of these ladies when they needed it.  Well it is time we carry you.

Alright Jan, I took my black veil off when I posted this reply.  Get that new med they want you to take and you go girl! Miracles do happen. Heck! if God could give the OCTO mom 8 babies with no daddy and 6 at home yet the world cannt see why- that only becuz God sees something in her and gave her that miracle. Miracles do happen.
Penny

[henning]

I'm sorry I forgot one more thing, the bed pan. I had to use one with preg. I cant rember BUT I do rember them to this day being steel and cold.  I can understand how you must have felt. It might have been the shock of the whole thing and I couldnt go cause laying down is not my normal position and handing it back to them- it was swishing all over the place- I was more scared it was going to spill on me LOL I can look back at it and laugh about the whole experience but it was embarassing at the time it happened.  Although, I probably could of had nooo problem using it when I was drinking and to hung over to get out of bed!  and I could use it now but strapped to by butt because I dont wash out messed underware I toss them. My daughter used to get so mad at me when I had my grandkids and I threw them out. I aint touching that, not even my own.LOL
Penny

[junamgen]

Thank you so much for updating your situation.  It is heart breaking to learn what you have been through for the past several month, somday I'll be in that situation too and you have showed me how to handled it well.

You willl have my Qi and prayer to make Avastin working!!!!!!!!

Peace and Love

jun

[bohan54]

Just this morning I awoke with the thought that although I do fear death, the suffering we have witnessed is way more terrifying.   Why can't they just induce a coma for us to go softly into eternity?  
My sister yelled at me the other night about not getting more opinions, yeah right, just what I feel like doing with my limited time.  We were dealt a bad hand, we've played it the best way intelligent women can but those damn cards ain't changing.  
I've never heard your voice or seen you face (except for in some cute pics) but I care about you so much, the tangibles don't really matter.  Thanks for sharing your raw emotion, what else is there?
Love,
Sharon

[bohan54]

PS  posted a note to the miracle cure spammer

[henning]

Its just me again

Wow Jan!  All these posts are for you! The empowerment you have given to everyone here-that is a gift you have and you have given it freely. So stop acting and living like you are already dead, becuz your not. It might be hard becuz of the pain and being tired but make the most of what you have. I beleive you have that strength inside of you and you want to know why I believe that? (even if you dont I tell you anyway k?lol) Because everyone here in this forum can feel it and that includes me. You need to believe that now.

I was thinking about the bedpan issue-if you ever have to use it again it is a little easier.  Think of the bedpan as having sex for the first time it is shocking when you see it coming at you, it is uncomfortable and when your done it is embarrasing and you do not want that stuff spilled on you. The second time is a little easier and after the third it is a breeze and when you have to go you will be begging for that pan. Just like having sex and you can chose if you dont want to use it anymore. LOL I dont even know if can be posting like this (I guess I will find out). Just chatting with you.

On a more serious note, I will burn sweet grass and tobacco and pray for you, the smoke and prayers go right up the Creator (God) . Kinda like Hot Mail. LOL
You are in my thoughts
Penny

[cirella]

Jan, my love...it hurts to read your inner most thoughts.  But, I know you and you are the truth.  I pray with all my heart that you get that miracle.  Thank you for telling us what is going on.  Stay as strong as you can.

Love ya!

[Angie_Lou]

Dear Jan,

You shine bright like the Sun, even on the cloudiest day
Close your eyes, lift your head towards that ball of fire
And let your body absorb it's warmth and power.
Your soul is it's spit-fire strength, even in your most anguish moment
Because, you will always shine bright, like the Sun.

You have been in my thoughts and prayers daily.  When times are hard to cope with, we view Life with a realism that doesn't seem so miraculous, but indeed Life is a miracle and I pray Avastin is your miracle drug.  Even when the pain is at its worst, I know you continue to have the will to fight this beast, because you said, "I am not really finished with this life yet."

One last thing I'd like to mention; you have always been one of Jesus' chosen.  Know that in your heart and let it comfort you when you need it.

God bless and I hold my hand out in a circle of prayer for you.

Love, Angie

[dawnlyn]

I am praying with everything I have and from the bottom of my heart that the Avastin is your miracle..........I think you know what a beautiful person you are, and how you are an inspiration to many... I hate this disease and pray daily that a cure will get here soon.......I know you have hope and love..I think of you often........I will be praying as always........Love, Dawnlyn

[ireneo]

As always your thoughts are touching and clear. Well said little one. I'm proud of you.

I have no idea what has gone on in your life before; I just know how much you've touched people on this board. That's a legacy to be proud of. Your time isn't up yet. Whether it's one month or 12, I'm confident your love will be reaching all those around you. It doesn't always take words. Remember, one of my most favorite memories of my Dad is seeing him smile.

Don't worry about judgment. Just as we love our children even when they make a bad decision or a mistake, God loves you even more.

Hugs and smiles for you,  Irene

[turtle221]

I know that I don't know you but I wanted you to know that I am praying for you and your family.  I also wanted you to know that your words have moved me very deeply.  The section of you post regarding accounting for your life when you meet God, it has inspired me to work harder and be a better person.  Thank you for that.

God bless you.

[JC145]

Dear Jan .. I wish things were different and you felt more optimistic.  I will pray that the Avastin works for you and the miracle happens.  You have given so much help and hope to others, I wish I could do the same for you.  I will continue to pray for a positive result from the chemo.  I will pray for peace of mind for you and Cory.  I will pray that when your time comes, you are ready.  I know the Good Lord will be waiting with open arms for you.

God bless and keep you .. .Judy

[Sandymac]

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

[SimplyStar]

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

[lvfrogs]

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

[Flicka0459]

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

[ChrisP2236]

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

[fungirl1011]

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

[Teresa222]

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

[OzBron]

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

[Beachwalker33]

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

[butterflytc]

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

[justscore]

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

[doicat]

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

[PinkTissue]

I am really sorry to hear this mail.

Ever since I heard that your insurance company has approved Avastin, I am elated and have been praying that it is the miracle drug you needed.

It pains me to read what you have written but at the same time, it is so brutally true that it hurts.

I would continue to pray for you.

Hugs
PinkTissue

[Brownie3321]

I don't know what to say. I did not want to read this, it is very upsetting because I love you. I would rather talk on the phone about this - I just can't express what I feel by typing. I'm going to call you Jan. I would love to hear your voice. Praying for you XOXO - D

[crecco]

Hon,
  That is what this forum is here for. We cannot pretend that there are only good sides to ovarian cancer because those of us that have it know better. Honey if it upsets anyone, it is only because we hate what is happening to you and wish that there was something that we could do. I understand how you felt about the bedpan, as I am the same way, I won't unless there is no other choice. I had a first the other night also. It was the first time I could not walk myself into the ER. They had to come and get me in a wheelchair, and I even hated that!
  The messages and notes get overwhelming at times so never hesitate to use the forum as I said that is what it is here for. At least that way you can make sure that you have let everyone know. When you feel so terrible it is easy to forget some people when you start trying to send individual messages.
   I am glad that you are still feeling good enough to spend time with your family and friends. Speaking of that, Jan I have told you before, if there is ever anything you need, please do not hesitate to ask. I would gladly come down and spend a few days with you and try to help in any way. I don't care if you don't feel up to entertaning, that is not why I would be there. I also don't care if your house is not as clean as you would like it or you just don't feel like getting out of bed. I would be there for you hon and more than glad to do so.
  Know that I am praying for you daily and that the avastin will work. Please talk to your Dr about trying it with another form of chemo, don't just give up. I know for myself, it has worked better when combined with something than it has on its own.
   Jan you were the first person that I ever actually spoke to of all the women I have met on line and have always felt a special bond with you. If there is anything at all that I can do, please let me do it for you. My heart is hurting for you right now and I feel so helpless.
Hang in there.
  Love Chris

[Tybear]

Hey Jan...
I'm going to be honest in saying that I've completely avoided responding to this post for purely selfish reasons - I just don't know what to say and what I do know to say, is just too hard.
Don't ever apologize for your feelings...this is a forum where we come to share...it's not always going to be "rainbows and butterflies"...
I'm sorry your hurting Jan...I wish I could take away your pain.
I love you very much...
Becky

[Hindat]

I don't post on here much, but I come here everyday and I am very sad to hear that you are going through this.  I am praying that the avastin will work for you.  I truly hate this cancer, what it has done to you and all of us here.  Each day I come here hoping to read that they have found a cure for us all.  I will continue to hope for that though sometimes it is hard to do.  Just wanted you to know that you are not alone, you have many people who care about you and even though I don't know you in person I am one of those people.  

Linda

[bohan54]

Thinking of you tonight.
S