Not so good news

[Brownie3321]

This is very hard for me to write, but I can’t vent to my family about it. You all will understand, and some of you may have already heard the words that were told to me today by your own oncologist. I went to see Dr. Wolf today to talk about what the next plan of action would be based on her professional opinion. The news was bleak, and extremely hard to swallow. My parents and fiancé were with me, but she wanted to exam me first which gave us some time to talk privately. Dr. Wolf asked me what my thoughts were based on the tumors found surrounding my liver, and I gave her a quick shrug of the shoulder and asked her to cut to the chase. She said ‘Deandra, your chances of beating this cancer are slim to none at this point.’ This is where the air started to deflate from my balloon of strength and will to survive. She explained to me that my cancer is VERY aggressive (tumor nodules were already the size of a golf ball), and that she looks at my case as non curable. I asked about the stem cell transplant and she said she would not recommend it regardless of the use of 2nd line chemo drugs first to shrink the tumors. She elaborated on the risks and toxicity of the stem cell transplant, leaving no side effects out, and how she feels it would do more harm than good. Her words were ‘in my 20-some years of experience with ovarian cancer and stem cell transplants as a possible treatment option, ONLY those with minimal residual cancer left in their body responded to the transplant.’ I then asked her why we couldn’t still go on with the transplant, and she said at this point, there is only a 10-15% chance that ANY chemo will work enough to leave “minimal residual cancer” as a starting point for the high dose to attack. I asked about surgery, she said there are too many to deal with and it would only put my body at risk for infections and complications. To make a long story short, she delicately told me my cancer is growing too rapidly to search for any other options to prolong a remission any longer than a few years. At this point I asked her for a prognosis BASED on my individual case, also assuring her I would not read too much into the number because NO ONE can be absolutely sure. She said 6 months max if I decide to omit chemo and live my life, or 1-2 years if we can find a chemo sufficient enough to keep me comfortable. I then asked her what she would recommend for me to do, and she thinks going back to Colorado to start a chemo program of Doxil and Avastin for 3-4 cycles, then come back to Houston to re evaluate after a CT/PET scan. Best case scenario, the tumors will have shrunk, or be gone all together, and no spread of disease. At this point she would send me home for another 2-3 cycles and repeat the process. If after 7-9 cycles, there continues to be no spread of disease and/ or MINIMAL residual cancer left in my body, we could rethink the possibility of a stem cell transplant. She did say this scenario would be extremely rare, but possible. Worst case, we find the cancer has spread even after 4-5 cycles of Doxil, we then would discuss another chemo option or I say ‘s@rew it, enough is enough!’
To be frank, she was very sympathetic when we talked privately about my prognosis, but visibly grim when we regrouped with my family and Luke. I asked her not to state her opinion on my prognosis in front of my parents. I asked if she could go about it some other way, and she did. She didn’t sugar coat anything when she was bombarded with questions from Luke and my parents, but they never asked what my chances were. I think she cleverly answered the questions in a way that didn’t offer them any unrealistic hope. Her attitude and energy was very solemn.
How do I feel? Depressed, ANGRY, helpless, worrisome, and most of all…SCARED. I revealed everything to Luke later on in the day, and he has been crying all day. Does this mean I am going to give up? H@ll no!! I am NOT throwing in the towel; I want to make that VERY clear. But, I do have a different perspective on it all. I will go back to Colorado to start the Avastin/Doxil program for as long as my body will respond, but I no longer have that attitude “whatever it takes” – I just don’t feel that way anymore. Luke and I feel as if we need to explore some different theories. Maybe a strict nutrition program would benefit me? Or maybe seeking some alternate medicine? Maybe I need to surrender my fears to God, and trust He will heal me? I’m open to all ideas…
I don’t want to die you all, but I can’t help but feel I am staring death in the face. Honestly, the most difficult part of all of this is watching my parents cry and recognizing the fear in Luke’s eyes. It’s ABSOLUTELY HEART WRENCHING.
This @%**&$ cancer SUCKS!!! I love you all and I can’t tell you how much I appreciate all of your messages of support and the prayer chain. On one happy note, HAPPY BIRTHDAY JAN!!! Jan, I got your message last night after I woke up in the morning. I’m sorry, my cell phone was on silent in my purse. I saved your message and listened to it multiple times today. You are such a special friend, and I love you dearly.
Gia – Your message made me teary as well. You are such a kind woman with a big heart. Thank you for being a beautiful friend, for your prayers, and for all of your concerns. Love you!
The rest of you please know I pray for each and every one of you. With love, Deandra

[Brownie3321]

Thanks again ladies for all your support. You all make me smile and encourage me to fight harder. With love, D

[annetti]

Don't loose that fighting spirit you have.  There's always hope.  My mother was told she had only 6 months to live when diagnosed with ovarian cancer.  That was 8 years ago.  She is still here and still fighting. You have your parents and Luke, who will be there for you.  Get your strength from them, and keep on fighting.  You are too precious not to.  My thoughts and prayers are with you.
God bless
xxx

[crecco]

Hon I am so sorry to hear this. And beleive me I do understand about not wanting to talk to your family about it. I do not talk to my family about things like this either. You are in all of our prayers and I say the heck with any kind of time frame. It is hard but you are a strong and courageous woman so I know that you will not give up. I wish I were closer so i could give both you and Luke a big hug. Thyankfully you have each other to lean on right now. Your cancer may be aggressive but like me i just know that somewhere out there, there is a drug that will slow it down.
  You have every right in feeling the emotions that you feel, it is natural. But you also have that will to live behind you, and I am certain that will make all of the difference in the world.
  You are so right when you say that this cancer sucks. And I have always said that i hate what it has done to me, but I hate what it has done to my family even worse. We are behind you all of the way.
     Love and hugs,
         Chris

[Scubagrandma]

Dear Deandra, I was told to go home and die last October.  My recurrent tumor was high grade and very close to heart and superior vena cava.  I chose to get another opinion and now am getting reduced Ca 125 with Doxil.  The six months I spent "dying" before I started the Doxil were the most depressing days I've ever experienced in my rather difficult life. Most of us just don't fade away into the sunset when we choose death.  There is some suffering, just as there is suffering to struggle to live. I made the choice to suffer toward life. I also try "alternative" approaches but western medicine has come up with so many new things in a very short time. Whatever you choose I wish you well, but don't base your choice on the anguish you see in your loved ones.  Their anguish will be tenfold when they are without you.

[Hindat]

I have not been a member for very long and I don't post often but I have read your posts and I am so sorry to hear the news you got.  I am glad that you have this place to come to talk because sometimes we have to be strong for our friends and family.  I am glad that you are back in the fighting mode.  We don't know what is going to happen, so never give up.  My father told me about a friend of his that had a brain tumor and was given only six months to live and years later he is still here.  I also have a friend that had ovarian cancer almost stage 4 and over ten years later is cancer free with no reoccurence.  There is always hope.  I know we are all told to stay positive throughout this which is so difficult to do, I was told this so much that when I did cry the first time I was scared that I wasn't going to make it but a friend told me we need to cry and feel anger.  You can still be positive.  I will be praying for you.  Take care.

Linda

[JC145]

To follow with Sandy's story ... please go on line and read Richard Bloch's story:   http://www.blochcancer.org/

I was given a copy of his book "Cancer... There's Hope ".  You can find it on the Info for Patients page.  This book convinced me that I must stay hopeful to win this battle.

You can read everything on the computer, so when it's late and your awake and alone .. have a go at it.  It's another form of good medicine.

Get 'em girl!

Judy C

[Sandymac]

I just want to echo what lafnatitall said... and I want to tell you a little story about a friend of mine that I forgot about yesterday.. think I was sort of stunned with your news. Anyway, 2005:  A fellow Realtor and friend of mine found she had Pancreatic Cancer after 6 mos. of testing, researching, etc..you all know that drill.She was 45 at the time. . Anyway, once found they gave her the grim news.. they only gave her 6 months.. The tumor in the worse possible place and practically sitting on a large vein She was not even a candidate for the "Whipple".. the only surgery for Pancreatic Cancer.  She , like you, is a fighter and said "I'm goin down fightin" if I'm goin' down' (and a few other choice words I won't repeat here)..And she had HOPE!! She never let go of that.. All this to say, she had the chemo to shrink the tumor but the doctors told her it was really a long shot, and didn't really expect miracles.She went to Johns Hopkins and Virginia Mason in Seattle and neither place gave her much to hope for but worth a try.. Cut to a few months later.. She had her "tests" after the chemo.. the tumor was so small, it could hardly be seen.. she went on to have surgery.... That was 3 years ago!!!! She is fine !!
I know this was not the same cancer.. but the point is: She chose not to believe the statistics, she chose not to give up , and she did not ever, ever give up hope...To this day she credits her recovery to the fact that she NEVER let go of that hope..She never stopped her research, she never let go of the friends that also clung to that hope and she is now still on the JH Pancreatic Cancer board helping others.. So Deandra .. I'm here to day wishing you hope !!! Just hang on to that and don't stop fighting!!!
Love,
Sandy (P.S. I'm posting this on main page instead of "note" or P.M because everyone needs that hope)

[Lafnatitall]

Colorado isn't that far from Salt Lake City...get another opinion from the Huntsman center.  They are world reknown for their cancer research...much more so than MD Anderson.  NEVER take ANY number from a doctor or from statistics.  There's something I've learned from this whole crappy thing...Cancer doesn't like a fighter; it's really quite a wimp if you ask me!  I'm IIIC also, and I'm not ready to back down either.  Borrow some of our strength right now if you're losing some of yours.  Keep your body strong...We're all scared with you.  Close your eyes, put your mind at rest, and feel the hugs that are surrounding you...as long as you have us, family, and friends, you are not EVER alone...EVER.

Hugging you now...Rhonda

[fungirl1011]

I have no clue what you are going through as i do not suffer from OVCA, but one of my very best friends does.  You seem to have such a good attitude and the strenght and WILL to live.  Do not give up hope.  God preforms maricles every day (my daughtre is proof of that.  She is autisitc, has CP and seizures and hs not been able to walk or talk till Easter.  SHe is 10 and after 10 years of tyring, she started walking!!!).  I will be praying for you and I wanted to know if it was OK to put you on a few prayer chains at church?  Please stay strong.  

Kasie

[butterflytc]

That's the little fighter I know! Celebrate your good days, allow your sad days, and keep up the strong will inside you. I am honored to know someone with such fight inside of her.
"Friends are like angels, they hold us up when our wings have forgotten how to fly."
God Bless
butterflyTc

[gma718]

You go girl...thats the little brownie that I know!!! I love you...and care so much about you.....stay strong and know that I am right by your side holding your hand...love, Gia :)

[Brownie3321]

I have cried all day today while reading all your posts. You all are so amazing and so encouraging. Yesterday was an AWFUL day filled with sadness, depression, and anger - but today has been better. I woke up next to Luke with a different perspective. I told him that yesterday was a completely natural way to respond to the news that you may not make it more than a year, but I'm ready to rally NOW. We promised each other NOT to think it is the end, not to go into the dark depression hole unless they have called hospice to my house. But, they won't - because it's NOT MY TURN!!! It just can't be the end for me. Nope, I don't feel it. I'll be honest, I know the uncertainty of death will creep up in my mind from time to time, but right now I need to focus on research. Marty - you have jumpstarted our thoughts on researching all other methods to keep me alive and well, and I can't thank you enough for your kind words. When I read your response, I could FEEL your encouragement and will to help me stay alive. I also have received many personal emails with suggestions that I am going to look into. I'm not leaving anything out - this is my life and I will fight for it till the bitter end.
I think it would be naive for me to say that Luke and I are going to remain completely positive throughout this journey, but it's safe to say we both are open to anything and I have promised myself and him that I will fight until my body gives out.
Again, I want to thank you all for the encouraging words and prayers. You all are family members to me. I love you all so much. Yours truly, Brownie

[DH63]

Deandra- You have never heard from me before, as I am new to this site. However, please know that I am sitting close by your side. The news you have heard today will need to sink in, then I am certain your "fight" mode will kick in. It has to, you are a young, beautiful woman with a FULL life to live. Take this time to be angry, hurt, upset, crushed, sad, scared, beaten up, and all the other emotions that will flow through you at this time. I believe that these emotions need to be dealt with and then we become stronger women for this. It somehow gives us strength to continue on. I am in a similar situation, but I am not posting this to talk about myself. I just want you to know that I truly feel for you. My heart goes out to you, your parents and fiance. I think one of the toughest things for us is the fact that we share truthful information with our loved ones and it hurts us to see them hurt! We can't win! So with this all said, my thoughts and prayers are with you, your family, fiance and friends. Hang in there girl and stay strong once you regain your emotional strength back. Here for you any time- Doris (DH63)

[JC145]

What can I add that hasn't been said above.  I am so very very sorry to hear your latest news.  I will pray for you and your family (and Luke).  May God wrap his arms around you and comfort you.  Keep fighting and believing.

Judy C.

[Shari4444]

Dearest Deandra,

I am so sorry for the news you received yesterday. My thoughts and prayers are with you, Luke, and your parents. PLEASE, DO KEEP UP THE GOOD FIGHT. You are too special to not. Take care, sweetie.

Hugs & Love,
Shari

[junamgen]

Very very sorry about the news and I'll keep praying for you and your family to hiking over the hump!

Best wish

Peace

Jun

[lvfrogs]

Deandra,
My heart just breaks hearing the news, but I know you to be a strong, courageous woman and as Jan said, something else might come along that will help you.  I know that I don't know you personally, but I have been reading your posts and you have answered some of mine and I care a great deal for you.  I will continue to keep you in my prayers, Cory and your family too.
Hugs,
Colleen

[Sandymac]

After reading the above,I wanted to tell you, I surely don't expect the outcome for you to be the same as my daughter's fiance'.That was ten years ago... .I only meant that I understand just a little of  what they must be going through on this journey. I'm sending them also all my prayers and good wishes for a total recovery

Again, much love,
Sandy

[Sandymac]

Deandra,
    As a parent, my heart is just broken for you and your parents and fiance'.  I have only a small idea of what they are going through since losing our daughter's fiance at 32 from a very rare lung cancer. .I don't even really know you but I have watched your journey since December. I just wanted you to know how much I am thinking and praying for you all.  You are such a brave , beautiful young lady, and as Jan said; "you don't know what will come up" .. maybe even today as we speak, tomorrow.. something may be found.
     And just look at this army you have fighting for you, checking out every resource they can find..every piece of research, every trial that can be found.. Please keep up the fight for those years.. And, know how much you are loved by everyone on this board, whether we have known you for a few months or longer.
   I'm usually up really late... and even though you aren't that familiar with me, if you ever need to vent, or just have someone listen, I'm probably awake when others may be asleep.. . Always feel free to use this shoulder...

Much love,
Sandy

[gah_70]

Deandra, I really don't know what to say.  I'm not sure a punch in the gut would feel any worse than reading your news.  I am so sorry you heard those words, but you have a bunch of prayer warriors on your side right now.  I am going to Relay for Life tonight, and I am dedicating my walk to you.  You may no longer feel like doing whatever it takes...and that is understandable.  So, hand the reigns over to us.  Let us do whatever it takes to help you find some things that may help.  We love you dearly, and we're praying hard!

Love,
Gail

[marie3B]

Keep fighting and we will keep praying. I am so sorry that you have to deal with this. Love, Marie

[Jan214]

Oh sweetie, I just thought this was your other post and was coming in to read the comments others had written, when I realized this was a new post.  Okay, screw them and the horse they rode in on!!!!   I am a little rusty, but I am going to put my research skills into overdrive and we are going to find out about every fricking  trial that is going on and when those might be coming to fruition.  You fight for those years she was talking about honey, because you have no idea what might come up by than.  Your Dr in Colorado didn't know much about stem cells. and just because MD Anderson, which is a fine institution, doesn't know about something else for you doesn't mean it isn't out there.  There are numerous prestigious institutions doing their own research and new things come to light everyday.  My onc said yesterday that the reason there is so much research in ovca now is because they have realized that ovca has similar properties to so many other cancers and ovca cells are a lot easier to harvest than say pancreatic cells.  That is good news for us.  I will never put off a phone call to you again.  Cory and I have you wrapped in a big protective bear hug.  He cried Deandra, and I haven't seen him do that since I woke up from surgery.  Not even with his dad.  We love you and we are standing right along with everyone else on here who is ready to fight with you & for you.
Love,
Jan

[butterflytc]

I do not have the words to say,  how sad I feel for you today. It is such  a shock and disappointment for you to hear this news, and for me to say you can do this? would be denying you the sadness you should feel. As long as I have followed your words on this board, I have seen you as the true fighter. In time you will be able to get your emotions straight and absorb some of this. If there is anyone on this board who will come out fighting again...I know it is you. I am sorry you have to go thru so much, I think of you often, and pray things will work out for you. Take care and God Bless
butterflyTc

[survivor_susie]

Deandra,
I'm in my middle 50's.  A three-time cancer survivor.  I've had a good life.  I think I speak for everyone when I say that if I could give you ten years of my life, I'd be honored to donate them to you.
Living in Boulder gives you lots of opportunity to seek help with alternative treatments.  I'm on several now.. PLEASE look into nutrition therapy and supplements.  None of them are weird, and all have been successful at adding years to people's lives.
Love, support and mushiness on this windy day in Colorado,
Kathy