This is my own story of life with advanced ovarian cancer. I do not offer medical advice, and my treatment decisions are my own. Please talk to your physician or healer and gain as much information as you can about this dreadful disease called cancer. Remember, knowledge is Power!

Wednesday, December 15

Contempt prior to investigation

Hello, my friends. I'm sticking my head up out of the rabbit hole to give you the latest scoop on Patty in Cancerland. I'm on round-the-clock morphine, with dilaudid thrown in for break-thru pain. I don't know how coherent this post will be, but I can get out complete sentences without slurring now so I'll give it a try.

I have a question for you: How many of us outright refuse some sort of test or treatment or program due to hearing only negative things from people who have already tried it? Whether it's AA or trapeze lessons or cancer treatment, I think we all do it. Last week at my support group one of the members gave me this quote: 

"There is a principle which is a bar against all information, which is proof against all arguments and which cannot fail to keep a man in everlasting ignorance- that principle is contempt prior to investigation."

What a great quote. It basically means that we shouldn't dismiss things without thoroughly checking it ALL out for ourselves. This quote applied to him (my support group buddy) when it came to getting radiation as part of treatment for his rare liver cancer. All he'd heard about radiation was how awful it was, how it didn't work, etc., so he flat-out refused radiation from the get-go. Finally, after much argument and persuasion from his doctors he went ahead and had the radiation. And it saved his life.

I had a follow up with my oncologist after being discharged from the hospital last week. He is getting very antsy that I'm not doing anything as far as treatment for my growing tumor. He strongly encouraged me to reconsider the clinical trial for XL 184. He also hooked me up with the radiation oncologist to see what he thought.

The rad/onc spent a great deal of time with me and discussing my previous scans. I will need a new PET scan to determine if my tumor is treatable by radiation or not. We are awaiting authorization from the insurance company (state aid) if they will allow another PET so soon, since it has only been 2 months since the last one. The rad/onc did say that radiation would help with my pain, at any rate. I assume that tumor shrinkage = less pain.

The clinical trial oncologist spent a lot of time with me explaining the drug which I am to try. XL 184 is getting a lot of positive response in tumor shrinkage. Yes, it also has a lot of potential adverse side effects, "potential" being the operative word here. He urged me not to make my decisions out of fear. At any rate, I have decided to go with the clinical trial for XL 184. I have an appointment on Friday to sign all the paperwork. Hopefully, I am still eligible for the study. We have to coordinate with my cardiologist since I'm on Coumadin, and I will have to discontinue it during the study.We'll need to figure out some other blood thinner to use so I don't have another pulmonary embolism. That would just SUCK, ya know?

I'm on round-the-clock laxatives with my round-the-clock narcotics but my bowel issues are still vexing me. My tumor has increased in size to where it's causing blockage. Now I have to go see another GI doc to get a colonoscopy. That's one scope I haven't had yet and I'm not looking forward to it. I'm back to daily doctor visits, tests, follow ups, etc. I'm still not sleeping so my PCP has added Elavil to my Ambien. I am trying like hell to stay OUT of the hospital.

I guess I've been isolating myself while the world moves on around me. There aren't a whole lotta people I can talk to about all this, except those who have been through it. Each time I have to go back to the hospital, see yet another doctor, or get bad test results- it all takes more out of me. I feel so alone sometimes.


  1. Oh Patty, it breaks my heart that you take time to post while you feel so bad. I'm glad you are giving yourself another chance with the trial. We don't know until we try. All you can do is try.

    I'll be praying for you dear. God Bless.......listen to some soothing music.

  2. That deep set loneliness... We may be surrounded by loving and caring people, who have the very best intentions, but they just can't understand what it feels like to have that pendulum over our heads. :(
    I'm glad you are considering the trial. Entering the right clinical trial has given me a year off of treatment, and no signs of disease (note - I am not in remission - my doc won't use that term!) :)
    I wish you the best, and hope the trial works for you. It certainly sounds promising! And remember - you don't have to stay in it, if you feel its not helping you.
    Hang in there.

  3. I don't really have any advice, but I am keeping you in my thoughts. I am so sorry you feel alone. It is a scary feeling.
    I am so happy to hear that you decided to try XL 184! Best of luck to you and please keep us updated! Thinking of you!!!

  4. I got nothing helpful but want you to know I care.

  5. Oh baby Sis, my heart goes out to you... I wish I could be there with you every second of every day, helping you and being by your side through all of this bullshit...Fucking cancer...that to me, is the worlds biggest curse word...I love you Patty and am holding (TIGHTLY) to your hand, or holding you up and walking with you on this horrible journey...

  6. Lyn, I feel your vibes coming from Down Under- thank you!
    Vic, I know you are with me and it gives me great comfort. I love you so much!
    Denise, Nat and Ksenia, thanks for your support
    and kind words. It's what keeps me going. :)

  7. My dear sissy, it hurts so much to know you have to go thru all this and to see the pain in your eyes, let alone your body, is horrible. I am here for you no matter what, every time and whenever you need me, want me, or just want me to shut up and be with you. You are my favorite person ever and you never have to be alone. I know that feeling and it sucks but I know you will be ok. Keep the faith and keep your beautiful head up. I love you soooo very much sissy..

  8. Darlin, you do whatever the hell you have to do to help you! I fucking HATE you're in such pain and I support any and every decision you make in this messed up journey. That quote is perfect, no one should ever turn their nose up at something they don't know anything about. You are smart enough and have been through enough to know what's best for you. I can't stand being so far away, I wish I could come there and help. Just know you're in all my thoughts and prayers and juju's and every little thing. All I want is my sweet Patty well! (well, that and me well too but I didn't wanna sound greedy ;p)
    I love you and I hope you know, you are NOT alone. EVER.
    I tried you a couple times today but missed ya. You call me any damn time, night or day.

  9. Patty:

    I'm so sorry you're having to go through all of this rigamarole to find something that works. But, since misery loves company, I'm glad we're hunting together. Keep your chin up and your senna close,


  10. Just wanted to let you know I'm thinking of and praying for you.

  11. hey - I know. It does feel lonely sometimes. Well, lots. Cancer is a pig. Even after you've had it [oddly]. And it sucks. But - I hope you do the trial. Seeing your next post in a minute to find out - it's an Adventure Novel! ;)
    You and Sarah should gang up on'll win for sure.
    Keep on keeping on girl.


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