Ya Only Live Once ... A Survivor's Journey: Random Thoughts, Hope, and This Week

It's amazing how little comments and brief moments can produce so much hope! I discussed with Dr. C a couple of weeks ago how concerned I was that the brain metastases seem to be so much more aggressive than the rest of my metastases. With each MRI, there is growth and new lesions to worry about treating. She explained that first, the brain mets have been untouched by any treatment, since chemotherapy doesn't reach them. And second, the MRIs done at the time of Gamma Knife Radiosurgery are much more "sensitive," or higher resolution, as I understood it, than a regular (not the correct medical term, I know) MRI. So it's expected that the Gamma Knife-time MRI done on August 17th may show more or even larger lesions than the first MRI done on July 5th. Surprisingly this information gave me some hope. Sort of a "Oh, it's not as bad as it seems" moment. But now that I'm putting it all on screen (paper would be the wrong word here!), I'm like, wait ... I've had 3 MRIs. July 5th, August 17th (at time of GK,) and September 13th. The last one on September 13th still showed growth. Soooooo, scratch the hope! Just half-kidding, here, there is always hope, right? Right?

I have a lot of people praying for me, and I feel the results. I am feeling better already on my new treatment of Ibrance and Faslodex! No more coughing, and I just have a feeling of overall improvement. I need to work on increasing my activity level and regaining my strength, and I'm not only motivated to do so, but I feel up to it. My issues with nausea have lessened, and my pain is also improved although prolonged activity of any kind, or lack thereof, kicks in the discomfort. I am SO thankful for these improvements!

Here is a link to an article about the new drug I'm taking, Ibrance. I don't think I've shared this here before (if I have, sorry!):
http://www.curetoday.com/articles/fda-approves-ibrance--plus-faslodex-for-hormone-receptorpositive-breast-cancer.
It describes my exact cancer and the exact combination of drugs I'm on (Ibrance & Faslodex) now. And I even more recently read about a couple of even newer drugs that are similar to Ibrance that are showing promising results as well. This just out on one of them: https://www.eurekalert.org/pub_releases/2016-10/esfm-rip100716.php. Yayyy! Keep the metastatic breast cancer treatments coming!

Speaking of new treatments, I'm going to briefly swing back onto my soapbox about the pink ribbon themed breast cancer awareness crusade. There is so much backlash toward pink ribbons and pink events in October, that there are now fewer fundraiser walks/races happening. This is not what we want! Of course there will always be organizations that misuse funds. This is true of all charities and not only a few well-known ones in the breast cancer world. However, you can't deny the fact that the big K has donated MILLIONS of dollars to breast cancer research. Unfortunately, many folks have withdrawn their support to not only Komen, but to other breast cancer funding entities as well. How can de-funding research possibly be a good thing in the long run?? I'm seeing "pink" events, but not hearing about how much money was raised at such events. I think the public is now well "aware" of breast cancer, unless you've been living under a rock. It's about more than awareness-- Yes, early detection does matter, but bottom line is WE WANT A CURE! Please donate, and donate wisely. Women are still dying and people like me are still fighting this very complicated disease.

It's only recently come to my attention that very little research monies are directed at metastatic breast cancer. I guess because there are fewer of us than early stagers? I am happy to see articles such as this: http://mbcn.org/2016/10/03/mbcns-metastatic-breast-cancer-research-leadership-award-2015-recipients-included-johns-hopkins-dr-andrew-ewald-and-baylors-dr-matthew-ellis/. And even happier to be a patient at Baylor College of Medicine's Lester and Sue Smith Breast Center! I have mentioned before that the physicians there seem to be more intimately connected with research, and there you have it. Dr. Ellis actually told me that he wanted to use my cancer cells (obtained during the liver biopsy) in the laboratory for research purposes. I wholeheartedly agreed, of course! (and then I asked if the mice would be named after me, because I sometimes have a sick sense of humor-- but seriously, I think it's the least they could do.) If I have to go through all that I have, I might as well donate some cells along the way so docs at Baylor and MD Anderson can use them for the good of all patients like myself! I mean really, who needs extra cancer cells just existing, multiplying, wreaking havoc, and going to in waste in their liver??

I've seriously digressed, but these are my thoughts, and I am happy to share them with all of you who will read them!

This week ... is kind of a big deal. I've had so many of those lately. Grrr! I'm currently off of Ibrance, as it's a 3-week-on, 1-week-off schedule. As I mentioned before, another Gamma Knife is scheduled for Wednesday, but Monday's labs will determine if my white cell counts and platelets have bounced back up to adequate levels. They were fairly low two weeks ago already, after just a short time on Ibrance, so it'll be interesting to see where they are now. I must have been pretty low, because I'm now on an antiviral to combat shingles! Why, God, why?! Anyway ...Hopefully all is good so the GK doesn't need to be rescheduled. I am already anxious about it, wondering if anything has grown in the brain since the last look 4 weeks ago, or if anything new has popped up. The way it's been going, there really is no reason to believe that they've just stopped growing and multiplying, except that I've had no neurological symptoms, and LOTS of prayer has been going up. I know that prayer can work miracles, but only if it's God's will to do so. I shall see, right?

Meanwhile, I'm still going through life and living as much as I can. Some recent moments...