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282804 tn?1236833591

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
37 Responses
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523728 tn?1264621521
Thinking of you tonight.
S
Helpful - 0
386450 tn?1263733624
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
Helpful - 0
135691 tn?1271097123
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
Helpful - 0
272338 tn?1252280404
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
Helpful - 0
295767 tn?1240188314
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
Helpful - 0
354706 tn?1279470795
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
Helpful - 0
653618 tn?1260603643
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
Helpful - 0
196469 tn?1365387975
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
Helpful - 0
146692 tn?1314331773
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
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
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
Helpful - 0
349465 tn?1289081764
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
Helpful - 0
225036 tn?1294509400
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
Helpful - 0
360216 tn?1218743000
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
Helpful - 0
643704 tn?1304684432
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
Helpful - 0
329994 tn?1301663248
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
Helpful - 0
167426 tn?1254086235
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
Helpful - 0
356929 tn?1246389756
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
Helpful - 0
415684 tn?1257329318
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
Helpful - 0
Avatar universal
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.
Helpful - 0
187666 tn?1331173345
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
Helpful - 0
378425 tn?1305628294
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
Helpful - 0
340734 tn?1256586262
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
Helpful - 0
Avatar universal
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!
Helpful - 0
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