The Trick About Treatments

Hi Friends,

Good morning. Although I didn't sleep well, tossing and turning, trying not to vomit, I feel refreshed and excited to start the day. It's all because I have such wonderful friends who help me research my protocols, awesome neighbors who print up research for me and take me to my IV clinic, genius brain tumor fighters who help contact experts for more information, and my loving parents who find the best German clinics. I feel so connected, fighting amongst warriors who are battling by my side.

This morning, when I woke at 5:00 am, I was frustrated and exhausted. I'm only at 1,500 mg of the homemade sulforaphane pills and I'm barely keeping it down. The target dose is double that. I'm worried that I'm not getting enough to pack a wallop against Hermie. Dan keeps telling me that I'm doing the best that I can, and that I can only do so much. If I throw up it will ruin everything. I just don't know how I'm going to get the dose up. I always thought that I had a steel stomach, but now I realize that I'm nothing compared to my buddy who killed her astrocytoma. She is a crazy, amazing, insane warrior.

It makes me wonder, more and more, if I should seriously consider the dendritic cell therapy in Germany. It's expensive, and logistically tricky, but if I had endless funds I would absolutely hop on a plane and make it happen. The only reason that I haven't already started the treatment is because I'm trying to beat Hermie with more affordable tactics. The sulforaphane works, it has been proven by my friends, but dear God it is incredibly tough on your body. The plan has been for me to get up to the target dose of 3,000 mg per evening, and then sustain that for two months, then get an MRI to check results. If somehow Hermie continues to grow, we would adjust the protocol, and probably head on a plane and add dendritic cell therapy and hyperthermia to my treatment plan. Dendritic cell therapy is incredibly effective for brain cancer, and since I found the tumor specimen from my brain surgery, I know that they can target the vaccine to my specific cancer DNA.

The whole thing is tricky. I'm not sure how long I can go without sleep, and still keep healthy. Without sleep, constantly fighting painful intestines and discomfort, a person might go crazy. It's not much of a quality of life. Very tricky. But......not to forget.......it works. It comes down to one simple fact, "What are you willing to put up with to save your life?" Well, actually, it's not that simple, it's not just what would you do to save your life, it's also, "What are you willing to do to try and save money?" You don't want to go into debt $100,000 if you don't have to. If we were loaded, and $100,000 was just a drop in the bucket, I wouldn't worry about it. But since we don't have that kind of money, we have to be smart about the treatments that we choose. It's sad that tons of people die of cancer every single day because they can't afford the best treatments. It's sad, but it's just a ruthless fact.

When you have cancer you're playing a tightrope of deciding when to do the right treatments, can you push out the expensive options? If you push it too long you might die. You're constantly evaluating the risks (death), and benefits (saving money).

And, for the record, this past weekend I did get to do something fun! A group of girlfriends headed to Lake Chelan for a girl trip. It was very low key. The weather was cool, which was perfect for the hot tub. It was nice to get out of town. After vomiting (and such) on Thursday night, I took two nights off from the sulforaphane pills. It was glorious. It's fun to be one of the girls, goofing around, talking girl talk. I enjoyed pretending that things aren't so difficult. I loved not having to plan my days around pills & breakfast, pills & research, run around the lake, pills & lunch, pills, research & pills, pills, pills, pills, nausea & pain & fitful sleep. It's important to have some time to just be. Just exist.

Just The Facts

Sorry I've been MIA (I love you SoCal - I'll call soon!). Between the IVs, the homemade sulforaphane pills 6-8 times a day, researching the top experts on high dose IVs and dendritic cell therapy clinics, trying to keep up with exercise, corresponding with clinicians, and experts - like my friends who have beaten their brain cancer, etc., my head ends up spinning, and by the end of the day I fall into bed late at night, exhausted. Some days, like Thursday, I'll lose the fight with discomfort after hours of restless sleep, run to the bathroom and lose the homemade sulforaphane pills from both orifices. Yep, I know, it's disgusting, but sometimes it happens. The amount of pills that I'm ingesting, are very tough on my body.

I have a lot to say, and wish I had the energy and time to do a post every day, but I keep finding myself needing to research my current protocols to verify that I'm getting the proper treatment. I have to double check the reputations of my doctors, and the validity of their recommendations. I don't trust other people to have my best interest at heart - medical professionals anyway. I've been burned already, and I have to make sure that I'm getting the treatments that I'm paying for. Long story.

I am completely overwhelmed trying to verify things that I'm using in my protocol. For example, there is an internet article stating that high dose vitamin C can spread astrocytomas. I can't find the research to back it up though. In fact, I've found a researcher from Kansas University Medical Center who seems to be the leading expert on the subject and has the complete opposite opinion - with facts to back it up. She uses high dose vitamin C on all of her cancer patients, even when they're going through chemo or radiation. She has the research and facts to prove that it causes hydrogen peroxide, a pro-oxidant as apposed to an antioxidant which occurs in a low dose of vitamin C. Hydrogen peroxide in the brain alkalizes the tissues making the environment inhospitable - cancer hates oxygen, that's why exercise, meditation, and deep breathing are so beneficial). Anyway, everything is incredibly complicated, and I've learned quite a lot, but I still have so much to learn. The more that I find, the more that I have to research. For example, it's not good enough to just take 75 grams of high dose vitamin C, you also have to figure out what's being mixed in the solution, you need to know how long it takes to administer (you want it to take a certain amount of time, the faster it goes in the higher the dose it becomes or something like that - it's all about the number of drips per second). Anyway, it's incredibly over my head and I need to figure it out to make sure that I'm following the protocol that Dr Drisko uses. She's the KU genius curing cancers with this stuff. I want what the genius recommends. Duh :)

As for my curcumin IV, according to some friends who understand how to calculate body weight, and the amount in my IV bag, my brain is only getting 1 micromole. For this therapy to be effective I need to be getting much more than that, like ideally, 25 micromoles. So, now I need to talk to my doctor and see what the deal is. Are they trying to administer enough to get a good kill rate (as in, killing the cancer)? Are they being scientific or are they going by trial and error. It's frustrating. I have to double check all of their work. Sorry if I sound like a brat. I don't want to be a brat. I don't want to be difficult, and truthfully, I'm always nice to the doctors, but behind their backs I get exhausted and frustrated. I realize that they're all human and that they're doing what they think is best, but the problem is that they don't seem to be following proven science. They're going more by intuition, which I realize has a place in medicine, but I need facts. I want to copy people who have already beaten their cancer. If it takes 25 micromoles to effectively kill astrocytomas in my brain, I want 25 micromoles. It would be horrible if I was paying an arm and a leg, and then my knees and teeth, thinking that my treatment is killing little Hermie, when actually he is thriving. We have to be relentless about every aspect of these treatments, and research the crap out of them.

On a much more fun note, check out the card that my blog buddy Ann sent. Totally awesome!! Thank you Ann, for the card, thank you for purchasing Hope, and for giving ME hope. I appreciate it so very much!!

Fighting cancer is incredibly exhausting, mentally, emotionally, physically and spiritually. Although I'm pretty pooped, I believe that the energy that I'm expending is giving me great results. I have to pick between various things, it's a balance, because I can't do everything. I can't accomplish it all, but I know I'm headed in the right direction.

No More Volunteering

Well, I did it. After another night of fitful bouts of jactitation, with less than enough sleep, I trudged through the pouring rain to resign my post as volunteer at the retirement home. I realized finally, after fighting it, that I need to focus on various pills that I take 8 times a day, extra sleep, the 2 hour bus/running commute each direction to each doctor appointment, and all of the other crazy things in our lives. I need to rest. I need to focus on taking these acidic homemade sulforaphane pills, which kill cancer but also my sleep.

Although I was taking a leave, I still went to Margaret's room for one final manicure. I feel like I'm letting her and everyone else down. They look forward to getting, and deserve to be, pampered, and it breaks my heart that I can't give that to them. While I was massaging her hands, Margaret reminded me that she had beaten cancer three times; renal, melanoma, and breast cancers. She's now 101, 102 in November. I thought she was 103, but she corrected me. Either way, she's an adorably colorful, broach wearing, mascara blinking, enhanced eyebrow sporting firecracker. I just love her. I love them all. After talking to the wonderful employees at the Hearthstone, the deal is that I can stop by any time.

I'm not going to lie, I cried three different times during my time at the Hearthstone this morning. I just love seeing everyone, the residents and the employees. They are always laughing, and joking. I'm just going to keep reminding myself that this is only temporary.

Final thought of the day, on my walk to volunteer this morning, I saw the most amazing little outfit. At first I noticed the ladybug umbrella, but as I drew near I saw that she was wearing her undies over her leggings. Awesome. I love her spunk! What a great mother to encourage her independence. I love it!