Medical Update 12/11/12 Good news & scary insurance news

I’m  behind on posting to the blog  as I’m still recovering from surgery.  I have 3 shoots yet to post, two by Paige Stoyer documenting both the “Girlfriends’ End-O-Chemo Party” and the “Surgery,” as well as my stories of recovery and then Fritz Liedtke’s amazing shoot of my chest 4 days post surgery.  I am 3 weeks beyond the bilateral mastectomy now and 2 weeks beyond a second unexpected surgery and want to post a medical update.  So 1 week after the original bilateral mastectomy I learned that the surgeon did not get a clean margin around the tumor due to it’s location very low on my breast.  This was not a mistake she made, but something she simply could not know until the pathology came back.  The 2nd surgery was 1 week later (with Thanksgiving week between) and was an outpatient procedure and not nearly as invasive as the first.  It was, however, stressful, as it didn’t occur to me I might need a second surgery and there might still be cancer left in my body after such a radical first surgery.  It’s also set me back on the healing process and when and if I would be able to drive or work in December.  I still don’t know.  A small price to pay for piece of mind, however.  I just got the pathology back.  Everything was clean this time!  In other words, the bilateral mastectomy and left axillary node dissection removed all of the detectable cancer.

I also learned that the 4 months of chemo was effective.  The tumor was less than 1/2 it’s original 4cm size.  (6/13/14 update: I later learned that this is incorrect.  The chemo did not shrink the tumor at all.  It was not 4cm but 1.8-2.0cm both prior to chemo and when it was removed.  ACT chemo is not usually very effective with ER+ breast cancer.  I did not know this.)  Cancer was found in 2 of the 8 lymph nodes (6/13/14 update: it was actually 7)  removed on the left side and the chemo had also shrunk those.  (I am not longer sure this is the case here either.  The tumor in the node was nearly 1cm.)  All good news as it means that, hopefully, the chemo also took care of any renegade cells floating around my body.  I think, anyhow.  I will still need drugs for the next 5 years or more to help prevent a recurrence.   What’s next?  The plastic surgeon placed expanders under my chest wall during the bilateral mastectomy.  I need “fill ups,” where saline is pumped into the expanders to stretch the tissue to create new breasts, over the next 3-4 weeks before radiation begins.  I was not recovered enough this week to start that process as planned.  The second surgery went in through the same incision and it’s not healed yet after just one week.   When you see the photos from surgery, if you choose to look at those (they will be password protected so you don’t accidentally see them if you don’t want to. They are very graphic), you’ll understand what a major surgery this was and how traumatized that area is.  I do still have to have 6-7 weeks of radiation every day, as there was cancer found in 2 lymph nodes they removed.  That starts 6-8 weeks after the first surgery, I think.  Or maybe after the 2nd surgery?  It’s all a bit confusing right now.  I have to wait for the radiation oncologist to look at everything to give me the final date and then the reconstruction plastic surgeon has to work within that time frame to “fill me up” twice a week to whatever point my new breasts will be.  I have to stop regardless of whether or not I am my previous D cup when I need to start radiation.  This is not a case of choose your ideal Victoria Secret size.  It’s more a matter of doing what we can with the constraints of the time we have and how I do with the pain.

Bad news-  I have no idea what my health care will be on January 1st as my plan is ending.  I just contacted Cover Oregon and they have no record of my insurance broker submitting my application, which I did several weeks ago, or of me even being on his client list.  The woman told me I was now past the deadline to be covered for Jan. 1, 2014 but that maybe the broker could get me something temporary until I could get coverage on Feb. 1.  To my understanding that would mean I would have yet another deductible to pay out of pocket for radiation during January that would not apply toward my new plan on Feb. 1, 2014.  This could be up to $5000 I would then have to start paying toward again in Feb.  I have a call into my broker now and have even contacted a second broker as this is very concerning!  I wonder how many other people with cancer have this additional stress right now.  Yikes!

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