Monday, November 5, 2012

Trying to be Brave

I had my third Avastin treatment on Thursday. It only took about 30 minutes, which is so much faster than chemo was. I was a little surprised that Dr. Gore wanted to talk to me, my mom, and my dad in a private room before I got my treatment. It sort of gives me a knot in my stomach to know I will be talking to Dr. Gore lately because he seems to be all doom and gloom, though really I do appreciate his brutal honesty. All the doctors (Gore, Barnes, and Huh) seem to be thinking that the Avastin might not be working, possibly because of the increasing pain and continued fluid buildup in my belly. They all have told me to go ahead and get this third treatment though to really gauge whether or not it is making a difference. I’m scheduled to come back to the hospital on the 13th for a CT scan and then again on the 15th to check the status of the tumors with Dr. Gore. I told Dr. Gore that my dad and brothers are taking me to Las Vegas on the 19th just so I could get out and have a bit of an adventure. He suggested tapping my abdomen to drain fluids again right before the trip, which I thought was a fantastic idea because that helps a lot with my nausea and comfort level (though not the pain). He also said if we find out the Avastin isn’t helping, he won’t start me on a new treatment right before I go to Vegas. I can start when I go back. His suggestion for that situation was to start taking the drug Etoposide (The “E” in BEP chemo) in pill form. I think he said the advantages of taking the pill version instead of an infusion were less side effects and being able to take it continuously instead of with breaks every few weeks. I mentioned to him that all 3 oncologists agree that I've run out of good options and I said, " It's difficult to choose between dying and going through some horrible treatment," and he corrected me by saying, "Well, at this point it's really a choice between dying and going through some horrible treatment and then dying." I don't want to die and I'm scared because the pain seems to be getting worse and worse. Lately I've been waking up in the middle of the night in pain. There is nothing left to do though but wait and see, and try to be brave. If I don't have a lot of time left, I want to make the most of it. I've been desperately trying to find someone to give me art lessons but not one has called back yet. I'm also trying to make a big deal out of Christmas (yes, it's pretty early to start thinking of that). I've been trying to think of thoughtful gifts I could give to people (probably paintings) and I made Christmas cards to mail out with a picture of me and Emma on them. Sorry, I can't post the picture or it won't be a surprise at all for the people who get one. :-)

Different topic: Medicaid. When I applied for social security disability, I was more concerned about getting on some sort of government healthcare (Medicaid or Medicare) than the monthly income I would be sent because being sick with no health insurance is extremely expensive in the United States. It just seems obvious to me that a person applying for disability will probably really need health insurance. I only just found out last week that I do have Medicaid but not with full health coverage. I was put on "Plan 1st" which apparently only covers pap smears and birth control. I'm so frustrated because I was so sure that I would be fully covered somehow. I simply do not understand the system and why I can't be covered. My dad has to shell out almost $400 per month to keep me on COBRA so I can keep the insurance I had before. Amanda, who works at the cancer center and has been so helpful with all this confusing health insurance stuff, is trying to see if she can get the hospital's charity care program to cover these COBRA payments, but she said it is a long shot. She is also going to see if I can get all my medications through the hospital since I have to take so many now. People like her really make going through these shit times easier. My parents do not have a lot of money and I hate to think of them suffering financially because of my medical costs.


  1. Hi dear.
    I haven't stopped by in a while. I am sorry to hear that you are having some complications and that it may not be working for you... That is so so sad. I wanted to share something with you, but hope that you already knew about it.. Please please PLEASE avoid sugar. Cancer is feeding off of sugar of all kinds, even splenda and other artificial sweeteners. It has been proven over and over again.. Cancer is created by a fermentation of sugar in your body (the man who found it out even won the Nobel prize i in 1931). Where the oxygen in the cell is being replaced by sugar! I have always believed that food can either make or break us! So please stay away from ANY sugar possible... AND if you find someone that does NUTRITIONAL RESPONSE TESTING using MUSCLE TESTING TECHNIQUE -- GO NOW! I mean NOW!!! RIGHT NOW! You will be happily surprised. Keep hoping!

  2. Hi, I have not made a comment for some time - sorry.
    I will try to post a full one tomorrow, that will say more about how I see things.

    I will look into the SS Disability. I am almost positive that OVC 3C is an automatic (and immediate) condition for full benefits. Maybe I will send info to the foundation email.

    You are brave! I can feel this from your words. It may sound odd, but no matter what you will retain your dignity and sense of self.

    Until next time - "This Buds for You"

  3. Hello Beautiful! I'm so glad you posted this blog link again and I was able to catch up a bit on how you are. Please check your FB messages - I have an update on an art possibility!
    Prayers, thoughts, and love.
    Kathryn Buchan

  4. I will put this here, get back to me if you want more info. I do not know how or what you filed with Social Security. It is a hard thing to face. What might need to be done is to file a TERI case, stating terminal illness - Ovarian Cancer Stage IIIC. This should force form SSA 2200 to be filed, That should make it a "Critical Case" and be flagged as such. The rest should fall into place. It sounds like the Doctor will have no argument in filling out any forms for this. You need to get full benefits if at all possible to help in the future.
    I wish this was not happening to you, and that I had never learned about this crap. Everyone out there should really look up ovarian cancer and find out what it really is - and talk about it.
    Keep doing the best you can.

  5. Mary, you ARE so brave. Praying for improvement and encouragement!!

  6. Mary, I am so sorry and my heart breaks for you. You are so brave and so determined to live every moment of your life to the fullest. We should all take a lesson from you. You are such an inspiration!