Update!!! Some of you already know this but we have been extremely busy and we thought that we were going to know much more soon, so we waited a long time so that we would know more before posting this on the blog.
But the news gets much better towards the end of this update. (BTW: This is Janet writing.)
First of all, I flunked my 6 month check up on Nov 8. My CA 125 was up to 624!! Normal is under 21 and it has been about 5 since March 2011 . It came as a complete shock as I feel absolutely fine. It is only the doctor who tells me I am sick. I did have a CT scan and the radiologist saw some very small “nodularity contiguous with the surface of the liver compatible with metastatic disease”. He also saw “generous amount of stool within the colon”. I think that means I’m full of crap but did I need a CT scan to tell me that? :-)
I also got a second opinion from the Seattle Cancer Care Alliance (SCCA) of which the Fred Hutchinson Cancer Research Center is big part. Also the University of Washington Medical School. The SCCA is considered the state of the art in this area. Unfortunately, they gave me the same information but did agree with the original doctor, that there was no rush to go back into treatment until I had some symptoms. Therefore we are looking into an alternative treatment in Houston at the Burzynski Clinic. Our first appointment is Dec 27. He is doing some innovative research on “personalized targeted therapy based on what stimulates that particular patient’s cancer.” I have already sent a tumor sample to a lab in Arizona for analysis which will then give Dr. Burzynski the information he needs to devise a treatment for me.
So, all positive thoughts, prayers, whatever you do best, will be much appreciated. This is a serious disease. We had a good friend die of it recently. BUT, we have a lot of friends that were diagnosed and treated many years ago and are doing very well.
As you know, it is important to pray for, or visualize, or just think about the desired result. That is to always “see” me (Janet, aka Curly) in great health for many years into the future. For example, see us all walking on a wonderful, warm beach, saying, “Wow, Janet! You are in such great shape that it is hard to keep up.”
That sort of thing. That I am doing great, 20, 30 years or more down the road.
Dec 5 2011
This is Dave.
BTW, the Seattle Cancer Care Alliance is top rated, world wide. http://www.seattlecca.org/
In case we have not told you, as of a test on Dec 1, Janet’s CA125 is now down to 304!!!! Less than 21 is normal and the Dr has no idea why it went to the 624 seen in her Nov 8th test. I suggested that it was because Janet had just had shots for Flu, Typhoid, and Shingles, a few weeks before that test.
Janet says that her understanding is that as the detractors of Chemo point out, chemo kills not only cancer cells, but any fast growing cells, like hair follicles, lining of the gut, and much of the immune system. This is why they warn you to avoid crowds and people with colds, etc, while on chemo.
So, perhaps now her immune system, is finally getting back to full awareness and saying that, “Hey! There are still a lot of tiny seed cells here and there that hid from the chemo. I’m gonna clean up these leftovers!”
Thus, the CA125 was 624, and is now going down as more and more of the seed cells are killed and removed by the immune system.
We are asking the Dr. to have a look at the CT Scan from 4-18-2011 and make sure that the things that they “see” in the 11-9-2011 CT Scan are not scars from the surgery or other misunderstandings. In a Wonderful World, they could be tumors in the 11-9-2011 scan, but smaller on the 11-9-2011 films than on the 4-18-2011 films. They won’t know unless they look, and with an open mind.
“Asked by Galileo to look through his telescope at the newly discovered four moons of Jupiter, a representative of the pope answered: “I refuse to look at something which my religion tells me cannot exist.”
I quote it NOT to slam any Pope or Catholicism, but to slam closed minded stupidity, which is not confined to the religious.
Another important idea from a nice article written by a long time friend of ours
“An important thought comes from a line by Royal Robbins in his book on technical rockclimbing, Basic Rockcraft “…You better learn to see the world as it really is, and not what you want it to be, or one day you will see the ground coming up at you very quickly…”
Our plan is to fix this cancer and we are not going to quit until it is.
Dave & Curly