Saturday, August 10, 2013

The Road to Recovery...

...is a long one, I'm finding out.

These past several weeks have been quite a ride, as Jason mentioned in the last post.  I had my first mastectomy just less than two weeks ago, and am slowly healing from that.  I am quickly reminded of my limitations everyday, and that this was a major surgery, but hoping that I turn a corner shortly, allowing me to do more and more.

The surgery went very well, with no complications, but the pathology report that followed brought with it some very disconcerting news.  Remember when we told you about the last scans (MRI and PET) that I had last month just before surgery?  They had shown: (1) necrosis of the main tumor in the left breast with these new smaller tumors surrounding it, and (2) no signs of disease in the left axillary lymph nodes and chest wall (the internal mammary nodes).  Well, pathology after surgery found those tests to be inaccurate.  Upon further evaluation by putting it all under a microscope, the left breast was found to be riddled with cancerous tumors - taking up 90% of the breast.  The main, originating tumor showed no necrosis at all, and the smaller surrounding tumors had grown, despite the fact that I was receiving chemotherapy.  We were first elated weeks ago to hear that the results of the MRI showed the necrosis of that main tumor, when in reality, it all looked the same inside - cancer everywhere.  Also, there were nine lymph nodes removed from under my arm, and of those nine, four nodes contained cancerous cells.  Of those four, one node had the largest number of cancerous cells, and it was that one particular node that showed signs of a small amount of necrosis.  So how did these scans get it so wrong?!  That is my burning question!

I am terrified, and have lost all trust in my body, as well as these diagnostic machines, whose job it is to paint a picture of what is happening inside of me.  What does this mean for my future scans that will be happening to manage my progress?  When I asked my surgeon about how these tests showed such different results than what was actually happening, her response was, "No test is 100% accurate.  The only way we truly have answers is when we go inside and put something under the microscope."  So how realistic is it to do that for the rest of my life?  Not gonna happen.  As far as those internal mammary nodes inside the chest wall, we really have no idea what's going on in there now.  I will, however, visualize that the cancer is gone, and hope and pray that the scans got that one right.

The next step is for me to begin radiation treatment right away.  My oncologist would like me to be in a clinical trial that uses a PARP inhibitor along with the radiation, which has shown very promising results for women with triple negative breast cancer (which is what I have).  At this time, I am not 100% sure that we will qualify for the trial, but I have an appointment with a radiation oncologist this Monday, so we shall see how that all unfolds.  We will also learn how long I will have to go for treatments.  At this time, all I know is that it is everyday, Monday through Friday, for either four or five weeks.  Again, we'll learn more Monday.  I am a little nervous about radiation because I know it does  damage to skin and to underlying muscle (keep in mind, my heart is right there in one of the four areas that they will be targeting).  I can barely lift my arm now from my surgery, and this will be another obstacle in the way of getting my range of motion back, but I am young and determined to heal completely - I just expect it's going to hurt... a lot.

I'm not sure exactly how long of a break I will get between radiation and the next step, but the plan is for more chemotherapy.  Again, at this point, I have no idea what drug my oncologist will choose, or for how long, but it will all come in time.  Right now, I can only focus on the next baby step, which is to get stronger everyday, and then march into my radiation treatments with a brave face.