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

[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