Wednesday, July 2, 2008

Genuinely Happy Me

This afternoon I had an appointment with New Doctor. It was the first time I've met with her since before my Avastin infusion on June 23. On that day, I had 103 platelets. A CBC drawn today reveals that I have 126 platelets on board! This is tremendous as I have had no intervention beyond the daily onslaught of prednisone since my platelet infusion and WinRho push on June 13. Yay me!

I told New Doc that I wanted to get back on my chemo regimen but quick despite her recommendation to wait until after CyberKnife therapy. She confessed to being afraid to give it to me as I am likely to crash again. Well, duh. That's a given. We need to find a way to treat my disease and manage the ITP at the same time. It isn't going to be easy. But, if I am going to keep up my fighting weight, we have to experiment here and find a work around. Ultimately, we were co-conspirators on the same page, looking at the challenge and working together to suss out an action plan.

And I got my way. I will get my chemo with my Avastin next Tuesday. If you knew how I excited I am about this, you would have me committed. NO ONE should be this thrilled to know that they will soon spend the better part of an entire day getting infused with an indiscriminately toxic poison in hopes that it may, just may, slow down the progression of their cancer. Oh, but I am. I am!

My Love, The Kid and I are among the many of Americans who are partaking in a gas-price-crisis born summer activity known as the "staycation." The week after The Fourth, we will be heading to the Delaware River for some tubing, the Statue of Liberty, the Jersey Shore, and possibly an amusement park. We will also enjoy a fine dinner that was originally scheduled for Father's Day and get spa treatments thanks to a gift from friends for My Love's and my 40th birthdays... last year. Also possibilities if we don't drop: Wall-E and horseback riding. Don't worry, I've got a spreadsheet going to keep us organized.

I've a Problem with This
I received an e-mail from the Metastatic Breast Cancer Network today that bothers me. A lot. It reads, in part:

Come October, there will be a sea of pink with marches, walks and rallies as thousands of women with primary breast cancer are feted and cheered and honored. Yet, one third of women diagnosed with breast cancer will not be seen or heard. Those of us living with breast cancer day in and day out, those of us with stage 4 disease, those of us with advanced breast cancer, will be hidden in the shadows - misunderstood, feared, isolated and ignored. Our reality is never discussed at these breast cancer events. There will be no outcry for programs for those of us with metastatic disease. There will be no one speaking up for research aimed at targeted treatments to prolong life.

The e-mail goes on to let me know that:

MBCN has prepared a packet of documents designed to make it easy for me to contact my mayor's office to get Metastatic Breast Cancer Awareness Day, October 13 proclaimed in my city.

All I need to do is respond to the e-mail.

Oh, I am going to respond, all right. But not how the organization is hoping. One, I hope this is a well-intentioned communication; but it is irresponsible and poorly thought out and written. Two, there is no disputing that greater awareness of metastatic disease needs to occur. But to say that we are invisible and outright ignored by the breast cancer community when so many are working on our behalf is destructive, disrespectful and wrong. Reinforcing this misinformation with such an e-mail to our vulnerable population will only serve to make some with metastatic disease feel more isolated and frightened. And it appears manipulative. But, perhaps that's the intention: Prompt this community to jump to the organization's chosen action. This is shameful. Finally, from a professional perspective, there are much better vehicles for driving awareness of metastatic breast cancer than having some dumb day named for it. I'm not even going to get into that one.

Tracy's Purely Subjective F Stage IV News Round Up
  • Pre-clinical, but interesting. Demonstrates progress upon previous models. The news source, Reuters, gives it a little heft. A true news source found it worth reporting on.
  • Again, pre-clinical, but this press release discusses a potential therapy that crosses the blood brain barrier. This is important because so few therapies are effective on brain metastases. That's why radiation is a go-to therapy. But, if you have a lot of brain involvement, your options can run out quick. Especially if you need to undergo whole brain radiation.
  • This study is clinical, albeit very early. So, lots of time for things to go south here. The press release does note that Phase II studies are already underway in other solid tumors. But, that may mean nothing at all for breast cancer. Remember: hopeful but realistic, people.
  • Is your p53 defective? This article is on a first-in-class gene therapy targeted to restore normal function to the p53 tumor suppressor gene. Things that jump out at me: "groundbreaking" is a loaded word whether you put it in quotes or not. If you're going to use it, you'd better be right. Also, the reference to direction on marketing the medication not arriving until early 2009: I think I can wait that long. Plus, I'm going to need some time to find out if my disease would benefit from this type of therapy.


Anonymous said...

I am amazed at how you find the time to do all you do and add research to your plate to boot. Now that's taking control of your treatment! L'Y,AJ

Anonymous said...

Well, metastatic disease has a terrific spokesperson and advocate in you. Get out there and let your voice be heard. You are wonderfully articulate and creative. Go get them Tracy.

Love ya, Mom

Anonymous said...

You're amazing Tracy! You Go Girl And Give Them Whatfor!!!!
I'm pulling and praying for you!
I love you bunches.