Thursday, May 10, 2012

Building Confidence


This is the view from the house we rented in Kauai. The trip was fantastic, hilarious, refreshing, and unbelievably memorable. But, now I'm back, and I need to figure out what I'm going to do next. Sometimes it feels impossible to sift through the different random treatments (high dose IV vitamin C, IV curcumin, hypertermia, oxygen therapy, dendritic cell therapy - need to see if UW has stored tissue from my tumor, etc.), and it's overwhelming to evaluate clinics to make sure that they're full of honest, trustworthy people. Cancer is a billion dollar a year monster, and there are many a snake oil salesmen. At times, I feel like I'm spinning in circles, engulfed by people with all of the newest cancer cures, telling me to drink $32 dollar per 36 ounce salt water that has been ionized (or something like that), drink 6 ounces four times a day and I should be cured within 6-9 months. Seriously, a guy told me to do that. He didn't even know the type of tumor I'm fighting. I'd bet that most people honestly want to help, but still, it's just too much information. I can understand why people decide to just do the standard of care.

Just as a side note, at the appointment with the radiologist on Thursday, when we went to thank him, the guy said, "No problem. I'll gladly help my colleagues to clarify and aide further treatment." So, at that appointment, Dr F (the radiologist) had an agenda to get me on board to do radiation. His job was to convince me. I feel like I can't trust these people. He also said that the other radiologists haven't been accurately reading my last few MRI scans. What the hell?!? Who do I speak to about that? I have to pay these fools. Do they know that they're playing with my life? This isn't a salad recipe, you can't just do whatever you want. This is more like a souffle - I could completely implode. Do they have no humanity? Or - is Dr F just saying that to get me on board? Who do I believe? And if they have been half-assing my reports, I think I should get a refund! I pay these people just under a couple of thousand dollars a year. I just received a bill, so I know what I pay out of pocket. After insurance, a reading of my MRI is $438. Now, I get four of those a year....so.....that's a lot of dough. And that's just the bill for the radiology reading.

My doctors sure are pulling out all of the stops to get me under radiation beams - even though for my specific tumor it will not extend my life. I've been confused about the whole agenda. It has never made sense, until yesterday while I was researching alternative options. I then confirmed with my mother, and radiation, depending on the type (whole brain, gamma knife, beam, how many beams, how many weeks, etc.) is between $200,000 - $400,000. The co-pay is $20,000-$40,000. Are you kidding me?!?!? If I'm going to spend $20,000-$40,000, I'm going to spend it on treatments that will give me more time. It's ridiculous.

I still don't understand what's happening with my artemisinin treatment. I can't seem to figure out why the two smaller areas are shrinking, yet Hermie grows. There is a chance that the artemisinin is shrinking the tumor in the way that it grew out, reversing it back to the beginning, but it's scary to risk my life on the unknown. Danny and I have gone over and over, trying to figure out what we're going to do. There are some pretty amazing clinics in Germany, and a couple in Mexico. But, it's a huge commitment to research these clinics, and it's scary. It's a big leap. But, as a friend said, "Time is life." So, instead of continuing the low doses, we've decided to start the chemo drink. My friends who eradicated their tumor, used the chemo drink, ingesting it every evening for about a year and a half, then they switched to the artemisinin. At which point most of the tumor was gone.

The drink is incredibly labor intensive. It takes about three hours to create, you have to blend things together, then cook it at 100 degrees perfectly for a long time. It's going to be incredibly tough, but it's worth a shot. This isn't something I wanted to have to do, but I have to take major steps. I can feel the tumor in my brain growing. Even Danny has been continuously noticing my deficits. I've become more frustrated too, while trying to communicate. It reminds us of when I was trying to get better after the surgeries. The worst is when I'm incredibly exhausted. I've started stuttering some, and I can feel a disconnect between my thoughts and my mouth. There's an odd delay. I'm sure that others wouldn't notice the difference since they're not around me day and night, but it's something that Dan and I notice, and we're both scared.

I feel like I need to take drastic measures to stop the growth before I start to lose my reasoning skills. I don't want to have to step aside in my active roll of care.

For now, I'm sorry for the lack of email responses, or contact with friends, but I'm completely overwhelmed. I have a serious job to do and social stuff is going to be put on hold. Thank you understanding and sending the love, support, and the prayers - I appreciate it so much, and I truly need it. After Thursday's appointment with the radiologist, my sleep has been full of fitful bouts of jactitation (learned that while reading the dictionary with Katie Jarman). I wake up in the middle of the night with my heart racing, my body breaking out in cold sweats, even in Hawaii. Last night was the first time I finally calmed myself down, and managed to slow my fear. There had been a visceral reaction to the radiologist's dictation about my scans. It filled me with fear, and for the first time, I truly realized that I might actually die. I knew that this brain cancer could kill me, but I had never absorbed the concept. I now, truly understand and it's a horrible, horrible feeling. I don't think I was in denial, I think I was just hopeful and optimistic. Now, I struggle to keep positive. Last night, laying in bed, all I could to was continue my mantra, "I'm healthy and I am strong." But, I'm definitely trying to convince myself, and build my confidence, and I'll tell you what, it's incredibly hard. This is scary.

7 comments:

  1. Sending all our love & care your way. You do what you !!! need to do to beat Hermie. I am so sorry to hear you are being bombarded by to much "cure" information. We know from your blog that you are researching everything there is. You are a brave & incredible young woman, Jessica. Praying for you, Danny & your family
    P.S. Beautiful picture of Kauai :-)

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  2. "So Cal" PattiMay 10, 2012 at 2:16 PM

    I feel that you are the daughter I never had Jess and you mean the world to me! I send prayers your way everyday and wish there was something that I could do to take away your fears and restore you to perfect health! There is an answer out there that will cure you, we just all need to keep searching! Seems to me that taking the artemisinin treatment was helping and perhaps the chemo drink will help too! Don't ever lose your HOPE for a cure!!! You deserve it and we all love you!!!

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  3. Good luck with figuring out your next step. I can feel the fear spooling up. The fear is palpable. I wish your cancer could be taken away with a simple procedure, but you know better than anyone we don't have that ability yet. I hope you find some form of treatment that works so you can pass that knowledge on to other people in need of help. I've thought of how I'd do in a similar situation. I'm not sure I'd have your strength. Continue the fight and know that many people are pulling for you to succeed.

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  4. Jess,

    You wanna go to Germany or Mexico, Gene and I will give you our miles. The mantra I say for you is: "Everyday in every way, Jesse is getting better and better. Everyday in every way, Jesse is getting better and better. Every day in every way, Jesse is getting better and better." We believe you will win. Love you.

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  5. Fear is not such a bad thing, it is a great motivator especially coupled with love for yourself. You are and always have been a fighter, coupled with the love and the fear you can be ferocious. Go get em Jess, you can do this and make the best decision for yourself.
    Much love always, S

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  6. Your blog is incredible & you are amazing!! Have you heard of Bellaruth Naperstak? She has some awesome Cds to help allow the affirmations & treatment do their job. She has product on Amazon and I am sending you another link to her.

    http://www.healthjourneys.com/

    Stay positive! Sending you healing light and love.

    Lauren Franciosi

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  7. Jessica, Just a reminder that Andre and I continue to pray for you daily. You have an amazing strength and continue to be an inspiration to those around you. It is okay to be scared. Many of us around you are scared too. With that said, we still continue to look for a cure and a miracle for you. We will not lose HOPE!!!

    May God bless you and your family.
    Kindest regards,
    Rich and Andre

    ReplyDelete

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