...and who knows which it will be when? It seems like anything's game sometimes in life, doesn't it?
This last weekend we spent some time with a scientist/friend discussing possible clinical trials to get involved in. (Seems like there have been enough of those, but I guess these would be different than just "life's stuff".) These would involve getting vaccines for the breast cancer once a month or more. I need to spend a lot of time getting reaquainted with the National Cancer Institute's website, and maybe call a few folks to see what there is I can be involved in. At first peek, it looks like you have to have "failed" a standard therapy at least twice to be eligible. I've become resistant to, or "failed" once so far. Then you have to be off of the chemo at least 6 weeks. That's a little spooky, but if it's not working anymore, there would be no use being on it. The good part is (other than possibly it could prolong or save a life) is that they could fly me out to Maryland, put me up in a nice hotel, then pay for medical bills for the rest of my life. Dandy. As long as that's a long life, I'll take it.
The next thing is that we got scans set up, finally. It's been since November that we've taken a gander at the brain, and it's probably just as glad to have had a little privacy for these few extra months. How intrusive!! The RN just called, and said we're set up for this Friday the 17th. The brain MRI happens at 11 am, then I'll trot over to the hospital, drink the bilge-one jug or two, depending on how brutal of a mood the techs are in that day, then get a full CT scan done at 2 pm. Can't wait. We will then get results from Dr. Kenyon next Monday at 3:40 pm. I'll probably kick around the vaccine idea with him. It sounds like you can do vaccines concurrently with chemo., there are no side effects, and they are non-toxic. (Just like Play-Dough!)
We're also checking out some IV vitamin C, around 50-75 grams, to build up the immune system a bit more. It would involve going in about 3x/week until my body registered it had received a "therapeutic dose". That is the protocol that is deemed cytotoxic. (death to cancer cells) This is given in a relatively slow drip, as the V-C can be very acidic to the veins. (I feel like a slow drip some days) Thursdays I'm still getting chemo, and that lasts from 3-5 hours depending on the number of drugs administered. I wish I really enjoyed sitting on my behind for hours at a time. It would make this more enjoyable!
We will still look into ozone therapy. There is a new Naturopathic doctor in town who can do this, but we would probably need to travel to Portland to have it done as he has equipment accessibility up there. Tim, (the N.D.) works with an instructor at the Portland Naturopathic College. She has her own practice and also oversees all of the IV and ozone therapy at the college. He has been extremely communicative, has spoken with Jonathan, the herb man, and is very willing to work along side everyone as a team member. Yeah!! This is good, as I didn't want to have a situation that got stressful or even dangerous, with everybody doing whatever they thought was good and right in their own eyes, then tripping up somewhere. These are time consuming and $ consuming, so we're trying to go slow enough to make sure we're getting the right combination of people with the right skills, but quick enough to hopefully make a difference healthwise.
So far I'm still experiencing only minimal side effects, and I think that the "nutritional accessorizing" has helped a ton. I do seem to get a few nose bleeds from the Avastin, and can feel a bit rugged on Saturdays, but by Tuesday I'm not recognizing that I'm on chemo-except for the schnoz and a few occasional foot cramps. And...I still have my hair. And...a friend pointed out that my birthday's approaching. At first I wondered why that would be a big deal. (I'm kind of slow.)
Our hopes/desires for the scan results are...miracles. We all want 'em, don't we? "Give me this, give me that, then I won't be such a brat..." Plead and bargain all I want, but it comes down to trusting and having faith. The childlike stuff. So, Dad, I'm still hoping that the radiation tech. sees no brain lesions. None, zilch, zero. (In November there were 2 left, but they were tiny enough that the medical oncologist, Dr. Kenyon, couldn't find them, and Pat and I couldn't remember where they were. They were inactive at that time.) It would be great if there were none in the liver or spine. Two weeks ago, my CEA level (tumor markers) were at 7.1. If they stayed on their current trend, they should be down to about 4.1 this week. We will probably find that out on Monday when we see Peter. A marker of 3.4 or less is the magic number that I'd like to be at, stay at, live at.
One thing someone told us is that if you have Inflammatory Breast Cancer, you are automatically qualified for Disability Benefits. Possibly the kids are also. (The younger ones.) We're looking into that at this time. The basic requirement is that your illness is expected to continue for a year, or result in death. (Cheery) And you have had to work a bit and put into Social Security. Aaah...More paperwork for Pat. I think I'd rather have IV drips. So if any one of you fit the above category, check it out. No one in "the system" ever told me about this, so again, you really have to listen to the people going through it as well as rely on the medical staff.
Take care, and bless you all with eternal thoughts, eternal joy, and eternal love through Jesus Christ.
Jeanne H.
No comments:
Post a Comment