Saturday, June 19, 2010

The High Road

These days I'm feeling good and wanted to thank everyone for the positive vibes, prayers, good thoughts, and messages! I love getting back in touch with everyone, although I continue to fall behind on my correspondence. Just know that I love it. Thank you!

New Insurance
Since January 1, 2010, my new insurance - Anthem Blue Cross PPO - seems to be covering the very-expensive out-of-pocket costs I was incurring for some treatments! Instead of $3700/mo. for oral medication (Tykerb), they are charging me $15/mo. copay! No questions or problems, either. Additionally, they have covered another stereotactic radiation procedure in February, 2010 - again, no questions asked! It may be almost double in premium ($800/mo. instead of $400/mo.) and a $2,000 deductible a year, but so far, it's a lot less than I was paying! Also, I switched to allow me to see any doctor I choose, almost regardless of any "network", and that seems to be working, too. So good news all around there! As anything could happen, I'm just enjoying the current "non-problem" situation, but not counting on a future that does not include problems with insurance. As I have learned, it seems to be the rule, not the exception, that there are problems with doctors, staff, insurance, tests, etc. Yuck.

Latest PET/CT scan and blood results
My latest PET/CT scan still shows "Near Complete Remission" (as my onc. likes to write) from the neck down. Blood is drawn every three weeks before treatment (iv Herceptin), and it is "unremarkable" - yea! My CEA - the broad tumor marker that stands for Carcinoembryonic Antigen in case you're interested - is lower than ever. When I was diagnosed in January 2009, this number was 31.4, and is now 1.3. The normal range for anyone is 0 -4.7. It's been decreasing every 3 weeks and is now the lowest it's ever been. I also get checked for another tumor marker, the CA 27.29, which is supposed to be more sensitive to breast cancer, and it was originally 265 when I was diagnosed. It is now 15.3, and the normal range is 0 -38.6. So this is all very good news! I hope it continues this way!

In February, Jon and I did the Pasadena half-marathon. I loved it and was so happy to be there and doing it, but it was grueling in parts. I trained with a friend, but we only made up to a long-run of 8 miles beforehand, so I knew the 13.1 mile race would be difficult! Also, my friend had an injury that made it impossible for her to participate in the run, so Jon did it with me! Yea for that! Unfortunately, he got an ankle injury around mile 3, which made the run even more difficult. But we finished, a little over 3 hours after the start, and it was a fun goal and an emotional achievement. Now I need to get another goal b/c I need more motivation to get out there! Maybe some smaller 5Ks in the near future.

More Stereotactic
Also around the time of the half-marathon, my neuro. looked at the brain scans and definitely thought he could identify "new growth" which necessitated some brain radiation. I took his advice to do more radiation, but not his - and other docs' - recommendation to do "whole brain" this time. Whole brain is misleading anyway b/c they just focus on the lesions - not the whole brain - and do more traditional radiation from the outside, including smaller doses over something like 4 weeks. I said I wanted stereotactic again b/c there was a slightly smaller risk for side effects. The docs recommended traditional radiation to destroy the cells/lesions we couldn't yet see on the scans, but I'm still hoping to break that blood-brain-barrier on my own, give my immune system its best shot, and keep me entirely side effect-free, so we'll see how well I do! The February stereotactic brain radiation was performed the days immediately preceding and following the half-marathon, but I felt nothing. It was great. I'm glad I made that choice against traditional radiation, I just hope it was a good one in the long-run.

Currently, I'm on a two-week dose of steroids (Decadron), 6 mg./day broken up into a dose of 2 mg. w/breakfast, lunch, and dinner, to get rid of what my neuro. thinks is inflammation on the largest treated lesion in the brain (cerebellum). Since I stared the steroids, I have not been getting headaches - as I occasionally was for a month - so I think they're doing their job. I asked the neuro. if I could have a smaller dose of steroids than he originally recommended, and he lowered the dose, which is very good news for me. The side effects I've had from the steroids these last two weeks include: sleeping less (5 instead of 8 hrs.), some sugar/food cravings, quick-to-anger once or twice a day, some mild euphoria, and feeling "revved-up". I've tried to use the good side effects to my advantage by being industrious, using my new-found and regular will-power/discipline, and making "good" choices. So I've been doing a "two-week experiment" with a very good diet, all the right supplements, green-juicing, yoga, acupuncture, etc. to help the steroids de-activate the inflammatory response/pathways. Seems to be working very well, but I'm anxious to get off these steroids, since one is not supposed to stay on them for long!

I continue to do immunotherapy with the integrative medicine MD in Santa Monica. So far, I've received this therapy every week since February, and next Wed. will be the 18th treatment. I go to the doc's office to receive a small injection of GcMAF activator (Gc protein derived macrophage activation factor), which is a nano-particle and can be injected in the vein or muscle. I choose to go to the doc and have it done in the vein to get the best possible results. The head researcher is Dr. Yamamoto, who works in Philadelphia and Japan, and you can see some of the latest published research here:

The idea behind the macrophage therapy is that cancer patients make a certain enzyme (Nagalase) which turns off macrophages, a necessary white blood cell in the immune cascade, and allows the cancer cells to grow and thrive. It's yet another idea in a lot of the research I've seen out there that talks about how cancer makes a "hospitable" environment for itself and uses the body to help it grow by changing the micro-environment to its liking. Everything I try to do to effect the cancer revolves around making a more hostile environment for the cancer to thrive, and get my body to do what "normal" bodies do to cancer cells. The idea is that everyone has cancer cells in them all the time, it's just that a regular immune system usually recognizes these cells as foreign and makes them die. I think in technical-speak it's called "apoptosis", and I'm always trying to encourage this regularly-planned cell death to take place! I also try to turn off the inflammatory and glycemic pathways that may be activated in my body, to help make it harder for the cancer to overwhelm my system again. So, for example, I eat a low-sugar, low carbohydrate diet, but include more green juicing and movement. It makes me feel better everyday, I get to take some action, and I think it is having a positive effect!

So I'm trying to use this two-week steroid-induced psychosis (it's like starting everyday with a strong cup of coffee, and then there's another around lunch, and then dinner!) to make better choices and get things done. One thing I've been able to do is identify how I like feeling, and how I'd like to feel more of in the future. Sounds straight-forward and easy, but it's something I hadn't done and don't usually do. Also, I tend to fall mostly in the trap of subjectivity and relativism, so I can rationalize/make excuses for myself and everyone's' behavior and choices! But this time I came up with some things I like for myself and want to cultivate more of. Here they are!

I want to do more of this:
- Forget about my diagnosis and everything I've been told that means
- Live knowing there are no rules and there is no ground
- Feel healing occurring instead of fighting disease
- Think about the self recognizing the non-self
- Be aware I am living a deep, richer life b/c of this diagnosis
- Know that I have a great life!

As always, my deep gratitude for you and all the positive energy and attention you have put in my direction. My life is better for it!

Here's the song/video for the subject title by Broken Bells, which is Danger Mouse and Shins' lead vocalist & guitarist James Mercer, and one of my new favorites:

Hope you enjoy!