Caroline's Breast Cancer Blog

     Thanksgiving is a time for most of us, including me, to reflect on our lives and take note of the things that we are so appreciative of...supportive family, wonderful friends, great work colleagues.  This year is no different for me, except I've made note of a new category of items to acknowledge and give thanks for.       I am a true benefactor of medical research, clinical trials, and previous lung cancer patients who bravely participated in research protocols to find new treatments for those coming after them.  When one agrees to be part of a Phase I clinical trial, you become one of a small group to receive a new treatment so researchers can determine proper dosing, coupled  with documentation of all side effects.  In my language, this means they don't know how much to give you, how often, nor what bad things may happen.  Some Phase I trials are terminated prematurely because early on the side effects are recogniz...

          Just got a call from my oncologist's office.  Yesterday's scans show that my bone lesions are about the same, (a good thing), and the lesions in my liver are better...meaning fewer and smaller.  The most relieving news I received today is that there is no evidence of metastatic disease in my brain.  WAAHOO!!  There are lesions in the bones of my neck, but they were there from the beginning.      Today is a good day for me.  Maybe I'll sleep better tonight.       

     It's 4:00 AM and I'm lying awake thinking about my upcoming day.  In several hours I'll be having follow-up CT scans of my chest, abdomen, and pelvis to see what's happening inside me.  Ideally, there will be fewer tumors and the remaining ones will be smaller.  (Ideally, ideally...they'd all be gone, but I know better so I just hope for fewer and smaller.).       Along with CT scans today, I'm having a brain MRI to make sure that the cancer hasn't spread  there.  Although I feel like Xalkori has been working well for me below my neck, it's known that it does not cross the blood brain barrier. I'm told that researchers think that while Xalkori is working, the risk of brain mets is probably reduced, but certainly not zero.        If I haven't mentioned it yet, I'm really, really afraid of getting brain mets. Aside from associated (major) headaches and seizures, I'm so afraid of anything that will mess wi...

     I am a board certified, licensed genetic counselor.  In Illinois, to have a license, you must be nationally board certified. To maintain certification, one must demonstrate, periodically, that one's knowledge is current.  One way this can be done is by obtaining continuing education units, (CEUs), which one gets by attending approved educational conferences in genetics and genetic counseling.  Re-certification takes place every ten years and one must accrue 25 CEUs in the intervening ten years.  I'm up in 2015. The other way to get re-certified is to take the board exam again. [I'd almost rather have cancer.]  Since I promised myself that I would never take the  exam again ,  I have diligently attended annual educational conferences to accrue, at a steady pace, the needed CEUs so that I'd have 25 by 2015.  Going to these meetings is expensive...flights, hotels, conference costs, CEU fees, etc. However, going every year mea...

                       I had a six-month follow-up eye exam today.  The retinal lesions that were present in both my eyes 10-11 months ago are all gone.  Whew!  Good thing...if they'd gotten worse, I would have slowly lost my vision.  I don't know if it's the Xalkori that's keeping the retinal lesions away, or what.  In any case, I'm very relieved.        

       A few days ago, Wynn and I were flying home from a trip to Italy.  It was a long day of travel and the end of an amazing journey.  I never thought I'd be able to experience an Italian journey within my cancer journey.  A few months ago Wynn suggested going to Italy because I was doing well and he feels that we should do as much as we can, while I can.  Having never been there, I was totally on-board with the idea, but also strapped with worry...What if we get there and something happens?  Will I be able to get home OK?   What if we put out a lot of money and at the last minute my health doesn't allow us to go? Trip cancellation insurance is hard to get and expensive when one has cancer.  Wynn has a wonderful way of moving forward when I'm stuck in a place of indecision. He ignores me...you know, in that "loving" way only a husband can.   Mike, Ann, Wynn and me at St. Peter's Square      In the p...

     Today was my monthly appointment with my local oncologist.  I continue to be doing well on Xalkori and for now it appears that my disease is still stable.  Other than some mildly increasing bone pain, I feel pretty well.        However, since the beginning of the government shutdown, I've been really, selfishly, upset.  There are a couple second-generation cancer medications being studied under government backed, (NIH), research protocols that I've been following, with great interest.   It's possible that I could need one of them in the future when Xalkori stops working for me.  These medications are in Phase 1 and Phase 2 clinical trials and while our government is shutdown, the  clinical trials are also shutdown.  I've emailed my Congressman and hope you will too.  Go to House.gov and enter your zip code to find who your Representative is...then please email him/her and let them know how this shutdown is a...