Knowledge IS power

Well! I feel SO much better today! Not just because I haven't had chemo two weeks in a row (due to my liver being too distressed), but because I took the time to set a separate appointment just to ask, and get, some questions answered.

My head can go into very dark places if left to it's own devices (it's like going into a bad neighborhood, unarmed and alone). Having learned this the v e r y hardest way over the years, I immediately took some action so I not only won't go into that "bad neighborhood" alone, but this way, I get to avoid it altogether.

So I asked some questions and I got some answers. And, the answers have helped me stay positive and hopeful and optimistic, which is where I need to be every day, as much as is humanly possible.

I asked this: How much do I need to worry/be concerned over missing these 2 treatments? And, What do we do if my liver continues to react severely to Taxol?

My doctor told me this: that, while it is a concern, we have some flexibility here. Because my other drug treatment against the cancer at this time is Avastin (which must be given before any other chemo's in order to be effective), and, it's not as big of a concern (yet) to stop the Taxol, even though my liver is having trouble tolerating it. This is because of the Avastin benefits mostly; because Avastin is given with Taxol. Also, I was happily surprised to learn that 10% of patients get their cancer defeated by Avastin alone. I realize that's not a huge number but hey!, 10% IS 10%. When you're dealing with illness, that means something.

Also, it appears that already the two doses of Taxol that I've received are working! How great is that??!! So, Dr. P said, if it ends up that you can take the Taxol more intermittently than originally planned, it keeps us using the Avastin and, I tolerate it pretty well as far as fatigue and nausea go, which makes it likely that I will be able to continue with my college classes (though likely as half time vs full) and be a "working" mommy -- then that's the plan for now. Dr. P said if we were in a clinical trial, we would only be able to skip 3 weeks in a row before we would be "forced" to switch to another chemo medicine, so I'm thankful that's not the case.

I also had asked for a 2nd opinion on my test results regarding the cancers HER-2 and estrogen & progesterone receptors. After learning (from the first test) that the cancer no longer tested positive for receptors on any one of the three (Her-2, estrogen & progesterone; whic os referred to as "triple negative" cancer) -- I had asked for a second test/second opinion because I had read that 20% of the results of these tests can be wrong.

We reviewed the 2nd results today also and the results were confirmed. It was important to me to check because hormonal therapy is a big line of defense, which is no longer available to me now that their are no more receptors to work with.

In explaining this to me, Dr. P also said that basically we have already killed off those cancer cells which had those receptors. The cancer cells that are left are the more mutated cancer cells. These require chemo (radiation possibly too) and as time goes on, if the cancer keeps returning, it will keep changing, requiring treatment changes as we go along. Dr. P said this is common for cancer NOT to remain the same. This IS the primary problem with cancer; it mutates like a virus. I guess I should have already known this but hey, even though I'm hairless, I guess I had a blonde moment. (Hee Hee!)

For me, it always makes things less scary when I have a thorough knowledge of all the possibilities. I can't speculate then because I'm armed with the facts. Everyone should learn to be their own best advocate with docotrs because you have a right to know, to have your questions answered. If you have a doctor who thinks he/she is above talking WITH you (like a human being), you may want to get a different doctor. It's your life and your illness after all, you have a right to know what's happening to you. Also, doctors are people too; I mean, they aren't God for goodness sake, and they can make mistakes. You can always ask for a "patient advocate" to help you if you are using a hospital or clinic because most have them and, that's the sole purpose of their job -- to get what the patient wants/needs. They are on the patient's side and I've seen a few go to bat for me over the years (before I learned to speak up myself) and they don't mess around! They get answers. They are great resources so I encourage you to use one if you need help of any kind.

Lastly, my good, dearest friend found out she does have colon cancer. This is new for her; never been in this "neighborhood" before, dealing with cancer. She's going through the whirlwind of appointments, the mass of new terminology, the whir of tests and results and what that means to her.

My suggestion immediately was to tell her to get a large binder, a 3 hole punch and tabs and start organizing her paperwork. Tabs for calendar, prescription/med list, blood test results, other scans/test results, doctor & insurance contacts, resource lists, etc. Having to set this up takes a bit of work but in the long run it's enormously helpful because everything you need is there in one place. When your sick and someone says "where is that?" you just say "look in the binder under "--" tab. I also suggest an erasable wall calendar for appointments and tests; available for family, friends, caregivers and you, to see and add to easily. These two things keep me less stressed because I know I'm not missing anything and, because I get to review stuff at my leisure and jot down notes for questions for my doctor at a later time.

Enough out of me, I think! I can go on and on but I will stop here.

Anyway, as I said, "knowledge IS power" and I suggest everyone get some power going on in your life today.

You deserve it. Don't let anyone tell you that you can't either. It's your life, remember?

Take hold and conquer!