Saturday, February 17, 2007

Time to end Herceptin?

In addition to my falling MUGA, I got another nasty surprise last week: a bill for $800 for my last Herceptin treatment. It seems that my insurance may no longer pay for Herceptin; I need to call them on Monday to figure it out. The insurance statement was for $19,000 (which, you may be surprised to hear, doesn't mean much to me - I get statements like this all the time, at least once a month...I have accrued hundreds of thousands of dollars worth of treatment by now) and "only" $800 wasn't covered, but since it was covered at 100% before I wonder if my insurance company will no longer support my second year of Herceptin treatment.

Sigh. We can not afford $800 (or more!) every 3 weeks until September...not even close.

I am starting to feel like the universe is telling me that I've had enough Herceptin. 12 months is standard, and I've had 17 months. I hate to avoid any possible cures, but since this one is a big unknown (the study on one year vs two isn't finished) I just can't afford to cough up that kind of cash.

In better news, Genentech has approved my story and submitted it for FDA approval. I hope to get called to a speaking engagment soon.

And in other news, the local Komen office has asked me to chair a major new initiative that is slated to be a part of Race for the Cure. It would be a major time commitment for me, and involve a lot of responsibility. I am currently debating whether I can be a great mom and stay sane AND do the initiative. Only time will tell, and I'm going to go through a logical process (mapping out what the commitment would look like) to make the decision, but I am hoping and praying that I can make it work. It is an important initiative, proven successful in other markets, and I would like to be the one to make it successful in Seattle. It would be a way to bring powerful messages to thousands of women....and in doing so, it might save women's lives. I would like to tie my name to that kind of thing; I'd be proud to finish such an accomplishment. But I am also aware of how spread thin I am right I need to think about it further. If you're praying for me, please pray that I will do the right thing for myself, for the cure, and for my family.


Thursday, February 15, 2007

CA 27.29 report; MUGA results

I forgot to report earlier:

CA 27.29 is a tumor marker in the blood that is elevated in the presence of breast cancer; when I was diagnosed it was at a 44 (40 and under is normal), and since my original surgery I've hovered around 17. It's currently (blood work last week) at 8. Good news! The marker is notoriously unreliable but trends can be important and I like this trend.

My MUGA (heart test) has dropped, however. Normal is above 50, and I've been at 64 since starting treatment. In the past three months my score dropped to 56, which is still in the normal range but a significant drop. I'll get retested in another 3 months. If my levels continue to drop I would need to consider discontinuing Herceptin, and I'm hoping that won't be the case, as I'm betting a lot on that drug and want to complete two years of it. However, the risk of low MUGA scores are heart attack and congestive heart failure, and I won't risk that if the numbers fall too far.

I guess I'll update in May!

More juggling

I haven't been on much because I've been too busy! Life continues at the same breakneck pace.

I have turned in my Genentech story and it's been approved at the first level; it's off to FDA approval next (because I will be speaking about a pharmaceutical, I need FDA approval of what I'm going to say). I have also turned in 20 pages of content for the Komen Race for the Cure website - the written content came from me (or I stole it from other Komen docs and fixed it up). I've got Tessa's friend Jessie here for 3 nights as her parents are in San Fran; Jessie is a fabulous kid and a joy to have around, but still, it's kept me busy. Ryan and I have been doing some yard projects, mostly maintenance we'd been putting off. And then there's the usual preschool, swimming lessons (Tessa has improved dramatically!), birthday parties (two this weekend), and the like. I'm struggling to lose two pounds - nothing to "worry" about but I'm also aware that pounds creep on one or two at a time, and so I have to get rid of them one or two at a time. Exercise is sporadic at best; I need to better learn how to fit it in. I'm fully expanded now, and awaiting surgery March 2 for the new implant and corrections on the other side.

February 22 - 3-Day Kick-off party at my house (Interested? Email me and I'll invite you!)March 2 - surgery
April 15 - Whidbey Island Half Marathon
April 19-29 Hawaii!
May 12 - Giant Yardsale Fundraiser
June 16 - Race for the Cure

It's going to be a busy spring!

Additionally, I've been asked by Komen to head up a new program called "I am the Cure" for the Race for the Cure. It's a fabulous opportunity...I just need to see if I have time to do it. I'm still trying to figure out how much work Genentech will offer, and I need to prioritize that because there is a financial stipend for Genentech but not Komen. And I haven't forgotten my goals as a stay at home mom, either. I think today we're going to go to the aquarium. :-)

See, I really am busy!

Now, off to take the girls and take the dog for a walk...