Sunday, November 20, 2011

Brains Behind The Operation

Well, I'm still sick, but at least I'm feeling kind of better. As long as I'm vertical I can manage - horizontal is when my hacking cough sets in. I asked Danny yesterday why it is that I can handle brain surgeries, but not a common cold. What a baby! I'm still convinced that my immune system was juggling the stress of that silly little mole surgery. I used to be so tough, conquering things head on. What gives?

The only thing I can figure, is that I don't do well with optional pain. I also, will never elect to have surgery. I'm just too terrified. This little knife show that the dermatologists want to do, is a preventative measure. I had a mole removed and they thought that all of the cells were excised, however, unfortunately, the pathology came back as a moderate atypical melanocytic nevus and they left somewhere around 1-2% behind. Now they want to go digging for more.

The problem is that I'm a weeny. Since the cells are only "pre-cancerous" cells, and not cancer, there's no way we will ever know if the cells will progress. Well...actually...there is, I guess, if I show up with melanoma down the road. Of course, the fact has not been lost on me that I currently have brain cancer, so obviously my body isn't doing a stellar of a job fighting the bad guys.

Another thought swirling around in my head, is that the artemisinin that I had been taking (I stopped when I woke up with a fever and since I'm still dealing with a pretty serious head cold, I've put all supplements on pause), also fights melanoma with a vengeance. So, I wonder, do I need the surgery? Is this necessary? I've lost night after night about going through with this surgery, but what if I make the wrong choice? I've been horrible with the ambiguous questions ever since surgery, maybe even since I was born. I can sit on the fence playing the devil's advocate all day, and the next day, and the day after that.

I know I need to make a decision soon, but it's incredibly difficult. That partnered with a letter in the mail from UW stating they have scheduled my radiation. Yikes! I talked to an assistant to the nurse of my radiation oncologist (say that five times), and told her that they didn't make a very good case for me to do the radiation. The only positive outcome (they say) is that the radiation will stunt the side effects of the brain cancer. "Stunt." What the hell is that? Seriously? "For how long?" I asked. The answer was that they can't be sure. So, I'm supposed to pay for a procedure that does not extend my life, does not kill the cancer cells, and should/could/might stunt the symptoms of the brain cancer? Eh. Ok. That seems absolutely asinine. That's seriously the plan? I'm supposed to have my head screwed to a board and get beamed with radiation for an hour a day for 5-6 weeks and lose all of my hair, possibly lose some or all of my vision, possibly lose my motor movement and cognitive abilities? I might lose the ability to speak or read down the road, and it could cause more malignant brain tumors in the time that I have left? All of that, just so that they can say that they might have "stunted" the symptoms.

And, here I am feeling like the bad guy, the idiot, that doesn't want to do it. The naughty patient that isn't buying into the "stunt it" approach. I feel great not doing the radiation right now, I would currently be starting week 3 or 4 of treatment, but at the same time I wonder if I'm crazy. All of their words don't add up to doing the radiation, but at the same time, radiation is the standard procedure. Radiation is the next step. It's what you do.

Am I crazy to believe, or hope, that I might be able to fight this fight without radiation? Am I stupid to think that I can win this battle, and survive? Am I doing enough? Is this, currently silent killer, proliferating and taking over my brain? I want to win, but I know that wanting isn't enough. Thinking positive isn't enough. If I only have a 1% chance of surviving this brain cancer, I need a better plan. I need the BEST plan. I have the fight in me, but that's not going to kill it on its' own, I need the brains behind the operation.

I try not to stress about this cancer, but it is absolutely impossible, especially just before bed. My latest reprieve is a trick from my good friend Janice. I start by closing my eyes, and then I pick a category. Next, I systematically go through the alphabet, and find an item for each letter. Here's an example from last night (I even had Danny help me for a few letters, but it didn't work. It started to be a fun game, and we ended up laughing too much so it defeated the purpose - good on stress but bad on sleep). I picked the category of, Adorable Animals. For the letter "A" Danny picked, armadillo (don't know how cute they are, but I gave him a pass). For the letter "B" I picked bumble bee (also kind of a fail since bees aren't animals they're insects). Anyway, I think you get the picture. In all of the times I've used this technique, I have only made it to "N" before falling asleep. I love waking up in the morning and trying to figure out the letter that put me to sleep. All in all I think this fun sleep trick is pretty astounding and hilarious, either I don't have much in my repertoire, or it's incredibly relaxing. Either way it sums up as success!

Okay, time for bed. Tonight I think I'll try Bodies Of Fresh Water (including all rivers, lakes, waterfalls...etc....). Something tells me I'll be lucky to make it past "G."


  1. Glad you're feeling better. I think your intuition is your best medicine. Rude of the radiation onocologist to schedule radiation for you when you've not said yes!

    Mercury, the planet of communication (rules Virgo - your rising sign AND Gemini - your moon sign), goes retrograde Nov 24 - Dec 13th, which means making sure all the i-s are dotted and the t-s crossed because a lot gets mixed up and miscommunicated. But I'm not an astrologer so . . . I think you're doing a stellar job of researching and taking care of yourself. This cold/flu could actually be part of your healing process, but then I'm not a doctor either . . . so what am I? One of the many, many, many who love you! ?????????????

  2. Dear sweet sweet Jessica, your not meant to carry this burden, Jesus Says "Come to me, all of you who are weary and carry heavy burdens, and I will give you rest.
    What is out of your control, Jesus say's give to Him.
    Just as you cannot understand the path of the wind or the mystery of a tiny baby growing in its mother's womb, so you cannot understand the activity of God, who does all things.
    He's God and He knows you Jessica, talk to him, He loves you so much,My Husband and I continue to keep you before our Lord Jesus Christ
    Love Sandie

  3. Oh Jessie. I am so sorry about this damn tumor. I feel your concerns and your questions/statements about radiation are valid. It doesn't seem to add up quite right and I pray to God that it doesn't have to do with the money in cancer treatment. I think you are doing the right thing by questioning it and going with your intuition.
    I love you so much and you are beautiful.

  4. Great post Jess. It's nice to know you and Danny are laughing.
    Love you both.
    Erin & Pete

  5. Jess
    I continue to pray daily for you to Jesus Christ. I know it is hard going though this and trying to find the right answers. At the same time, the only thing that has kept me going is the peace and comfort i've found only in knowing Christ. I know that might sound weird, but i hope that some day you will understand that and know that too. These brain tumors are bad things and I don't pretend to have all of the answers for mine or yours but the only thing i know is that my faith in Him is all I have left at the end of the end of the end. Take care my friend. We should never loose hope but we have to make sure our hope is placed in something that's real. I"m so so sorry. Jess--fellow brain tumor fighter.


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