The Big "T"

I had a follow-up appointment with my oncologist, Dr. E., at Swedish Hospital last week. While there, she did a quick exam and answered loads of questions. I also had lab work done, as well as a bone density scan.

I found out a few days ago that my bone density scan is normal. On the blood work, I discovered that my vitamin D levels are low, so was advised to double the amount of vitamin D3 that I am currently taking (up to 2,000 units a day).

We Pacific Northwesterners are notoriously low on vitamin D due to lack of sunshine. Some studies correlate low vitamin D levels with breast cancer, so that's the reason why I'm being diligent about taking it.

The main topic with Dr. E. was that I am supposed to start taking Tamoxifen (The Big 'T'), which is a drug that basically cuts off the estrogen supply to my cells (thus, reducing my risk of breast cancer recurrence). Tamoxifen is a routinely-prescribed drug for many women after they finish chemo and/or radiation.

A recent study (Dec. 2008) found that about 7-10% of the general population cannot metabolize Tamoxifen, thereby reducing it to the status of a sugar pill. The bad news is that a woman may not know she is not metabolizing it until she has a cancer recurrence. The good news is that there is now a gene test that can be performed to determine whether someone is a "poor metabolizer" or a "good metabolizer."

I postponed starting Tamoxifen medication until I could talk to my doctor about it. She told me that she usually starts women on the drug and then, if they don't have many side effects (such as hot flashes and other assorted fun things), she will order the gene test.

Here's one reason why this is important: many women suffer major hot flashes while taking Tamoxifen (which is usually prescribed for 5 years). So doctors then prescribe some kind of anti-depressant to help with the hot flashes and mood changes.

Unfortunately, the studies now show that the anti-depressants actually make it MORE difficult for the drug to be metabolized. Catch-22. So, if you know up front that you aren't a good metabolizer, there are other options including drugs, injections to suppress your estrogen, and the ever-popular surgical option (remove the ovaries).

Never a dull moment in cancer-land. Lest you think that I am feeling sorry for myself, please don't. You've got to laugh about it or you'd cry. I think I'll laugh. :~)

In my case, I do not want to wait around for months to see what happens with side effects. As long as there is a test available, I want to find out now. So Dr. E. gave me the info to pursue testing on my own since it involves ordering a test kit and having it mailed to my residence.

I will have to pay out of pocket ($300) for the test and see if I can get my insurance to reimburse me later. Whatever. It's worth it to me to know up front whether this medication with such far-reaching implications is working or not!

I also just read today about a study that found the more side effects (in other words, the more miserable the drug makes you), the better off you are. The women with severe hot flashes, night sweats, and bone pain had a lower recurrence rate than the ones who skipped through without them. Grrrr!!!

Well, I suppose that is a good thing to know. It offers a bit of comfort when you're wondering why the heck you're suffering.

Yesterday, I had my three-week follow-up with the radiation oncologist, Dr. K. You may remember that he is the doctor who gave me a movie recommendation . . . hehe.

He likes to chit-chat and make things as pleasant as possible. Everything went well (skin is all healed up), and he reminded me to eat well and exercise (check).

Then he asked me if I'd seen "60 Minutes" the night before, as there was a great story about cold fusion. I didn't have the guts to tell him that I didn't know what cold fusion was (isn't that a music group?). He seemed quite taken with the story, so I made a point to look it up on the Internet when I got home and watch the video on the CBS news website. At least it didn't involve any nudity (see previous movie recommendation).

Dr. K. asked me if I would be willing to speak (on a one-to-one basis) with other women who are recently diagnosed in order to help them along. I told him, "Absolutely." He said that he would add my name to their list.

I feel very strongly that the time after initial diagnosis is when it's most important to talk to someone who's been there. I wish I would have had that. I did hook up with a few women a little later (which was immensely helpful), but the first couple of weeks after my diagnosis were brutal. Very scary.

I would love to be able to "pay it forward" and encourage someone else.

Lots more to write, but I'll save it for another day. We just celebrated "Pascha" (Orthodox Easter) last weekend and it was a wonderful, moving, tiring, beautiful time. I'm still processing it all. 

I'll be doing the Relay for Life fundraiser in June, along with my husband. I'm looking forward to doing something proactive about cancer, rather than being a victim.

Thank you for your continued prayers and friendship. I am just now beginning to realize just how much easier my journey has been because of your prayers and support. I mean on the level of it being profound. Truly.