Saturday, June 30, 2012

To Knife or Not To Knife

Yesterday, I walked a couple of loops around Green Lake with my friend Lauren. On the way to meet her (she lives in Green Lake like me so we meet half way), I saw this gorgeous dahlia. I mean, I think it's a dahlia. It was misting, and every plant had mother nature's glitter. It was a beautiful morning, a great day to be alive, to be healthy, to be able to walk and explore and laugh and talk. The possibility of another brain surgery reminds me of all the trials I worked through before. The first two brain surgeries were incredibly hard on me, and the recovery for months and months and months were horribly trying. But, I got through it. At times I didn't know if I'd get better. I didn't know if I would ever get my speech back together, find the words that I wanted to communicate with, my phonetics and word finding were in pieces. I didn't know if I would ever read again, or once I was able to slowly read aloud, like a child just beginning, I didn't know if I would ever be able to understand those words.

Any fears I might have about undergoing another brain surgery are definitely founded, but it still shouldn't hinder me from moving forward with a successful treatment. I used this analogy with a friend yesterday when she was picking up her cherries (thank you!), I want to hit Herman with a firing range. I want an arsenal to beat this tumor, hit him from all angles, give him no reprieve. Technically, according to the research, it's possible to cure my type of tumor in rats with various high dose supplements, and of course, our friends have already stopped theirs. But, I haven't been able to ingest the amounts that are necessary for killing doses like my friends did. We think that we're winning the fight, that the smaller amounts that I take might be holding Hermie at bay, or perhaps even reversing some of his growth, but the MRIs have not been definitive. In fact, my oncologists, and the radiologists, believe that Herman has continued to grow progressively. In order for me to be comfortable, I need to see more serious results.

At this point I take 29 pills in the morning, 24 pills in the afternoon, 48 pills in the early evening, 8 pills shortly after that, and finally before bed I take 6 pills. Most of them must be taken with whole milk so I'm tethered to a refrigerator. It's exhausting to keep up on the schedule, and I'm sick from swallowing all the pills - not to mention the fact that I feel like a cow. Literally. I find that on most days I don't even leave the house. The supplements may take years to heal me, and I need to keep on them in order to stay in front of Hermie's growth, to hold him back. It's a lot of work. If I go through with this clinical trial I might be able to aide my immune system to fight Hermie on my own. My body might be able to clean up the tumor, and heal itself. I could still take the majority of supplements, or all of them if I so chose, as my immune system also went to work. It would be an arsenal against Mr Herm. What's better than that?!?!

I'm scared to do another brain surgery, I think I've made that blatantly clear, yet I'm excited for the possibility of a personalized tumor vaccine. The freshest tumor has the best chance for success, so the surgery truly is necessary to be the most effective. Bad things can happen during surgery, I'm proof of that, and I'm actually very fortunate because I recovered from most of the ill effects of my brain surgeries. Some are not as lucky. But, this treatment could also heal me. It's a gamble, and we won't know if I'm a winner unless I go through with it and see what happens.


  1. "So Cal" PattiJune 30, 2012 at 12:35 PM

    Thinking of you and hoping that your trip to LA will help you to make your decision. My intuition tells me that this surgery will not be as complex as your past ones and that the treatment will kill Hermie for good! I live about 40 miles south of UCLA and will be cheering you on the whole time!!! If you have the surgery please have someone keep us all posted on the blog so that we won't worry! Love You!!! "So Cal" Patti

  2. Hi Jess, Got some cherries from your dad today. It was good to see him after so many years. I made a gluten free, bing cherry, dark chocolate chip crisp. YUM.

    You are incredibly brave and I know that you will make the best decision for yourself. There are MANY people out here who are cheering you on and sending all the positive energy your way that is possible.

    Thank you for being a shining light in my life.

    Lee Ann Walch (Dubail)

  3. Whatever you decide, you are a winner either way. You have proven that!!!

  4. I'm so excited to hear how your appt goes today. I'm in Florida on vacation right now, but if you want to talk just let me know. I know these decisions can be really scary but once I made my last brain surgery decision last fall I wanted to do it ASAP because the waiting was killing me. I had to wait about 3 weeks. Praying for you and your family each and every day. Jess

  5. Jess
    Andre' and I continue to pray for you. You continue to be such an inspiration and strong. All the best on your trip to California.
    Rich and Andre


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