We find out the results of Kevin’s PET scan today at his 2:30 appointment. I’ll post here, and we’ll call as many people as we can personally when we find out.
Staying positive is a challenge, but is critical. Some days are easier than others. Sometimes Kevin is down and I’m okay, and vice versa. Sometimes we are both down, or feeling strong and optimistic. We take turns telling each other “one day at a time, one minute at a time, one thing at a time” and “we can work with that” – no matter what.
I’m making him do all kinds of stuff. I have a big jug of water with the words “Perfect Health” taped to it, and am making Kevin drink it. I love reading Masaru Emoto’s books, and decided to try it. What the heck, I figure? It can’t hurt! His rice experiment is replicated by Japanese school children. Click here to see a YouTube video of a regular American dude who tried it. You can see the effects of negative & positive words simply taped to a container of cooked rice. After 3 or so weeks the positive messages taped to one container of rice remain pretty well preserved, while the negative one rots and has mold all over it. It really makes you think about blessing your food, and what words you use for anything – including Communion. (to learn more about Masuru Emoto click here, and to see double blind studies of his hypotheses see below:
Okay, enuf new agey stuff.
I had some great conversations yesterday with the nurse coordinating the clinical trials (new cancer immunizations and drugs) at the University of Iowa. For one thing, she told me to send all lab reports and PET scans to them, and see them in 2 days for a second opinion. My cousin, who is an oncologist, says she can’t stress this enough, because if Kevin has lymph nodes removed in his neck (pretty likely) this is a very delicate surgery and needs to be done by someone who is experienced with this specific surgery. Apparently, not just any cancer surgeon, but one who has specifically worked with it on the scalp & neck, and lymph nodes there. We are to ask today whether an attending surgeon will be present to assist with Kevin’s current surgeon. From what I understand, any mishap can cause serious problems, like damaged nerves, and a whole host of other serious, lifelong problems.
The same doc at the U of I who would evaluate Kevin is also managing several clinical trials, and can suggest different treatment plans – traditional or experimental so Kevin can make an informed decision. (The current place will likely only offer traditional methods, but we will ask how they feel about clinical trials.) As long as he doesn’t start radiation or Interferon, he already qualifies for these trials, which is great. Aside from the possibility of being more effective that standard treatment, several are free, or include free lab work and scans, which also cuts costs.
I’m specifically interested in the BRAF V600 gene mutation immunization. This mutation also sometimes causes webbed toes (and fingers??) and is responsible for many melanomas. It occurs in about 50% of the population. A very effective round of shots and immune-boosting drugs can help much more than the standard Interferon his current team is suggesting.
Plus, this addresses my serious concern is that we simply can’t afford consistent treatment for him, which can be anywhere from $700 per month to $100k per year, over and above our regular expenses. I would not be able to live with the fact that his health would decline because I couldn’t afford to get his meds or doctor visits. It would be unthinkable. The trials would offer the best experts, and late-breaking meds, and combinations of meds, so are worth considering.
I’m downsizing a lot of bills, freelancing and sending resumes out every day, but unless there’s a miracle, a lot of our material life will change pretty drastically, and fast. Miracles happen tho! However, if things don’t change by month’s end, we will have to make some huge changes – but all for a good cause!