Surprise, The Battle Becomes a War........

12/17/12--Monday--Day 65--Though the Challenge Gets Bigger, I Will Remain Positive

After my rambling chronicle of Friday's test day, tonight I thought I would be blogging about my fun wig shopping experience on Saturday.  But alas, that fun must wait for a future blog as the doctor called with my test results at noon today and many are awaiting those results, as was I.

I started the day rushing out of the house trying not to be absent minded since subconsciously I knew the results would be in today.  I had decided not to focus on that; the call would come when it comes.  I hit the office running and had little time to discuss my tests or wig shopping experiences with my co-workers as I had an administrator's meeting scheduled to start at 8 a.m.  There were some issues with student accounts, so my phone continued to vibrate with text messages as the meeting started and my team was working through the issue.  As I sat in the admin meeting, I was surprisingly calm.  I focused on the meeting topics and on the student account issue and wasn't a bit impatient for the phone to ring.  Shortly after 11, we relocated the admin meeting to a local restaurant to continued our meeting.  We all ordered then began our activity when my phone rang.  It wasn't "blocked" so I didn't expect it to be the doctor, but it was a Phoenix number so I moved away from the table to answer the call.  It was Dr. Byrum.  I grabbed my notepaper and a pen and moved across the restuarant so I could focus and take notes on what she said.

She started by saying there were a couple of findings on the PET / CT scan that disqualified me from being part of the Z11 study.  She explained that there was a higher glucose cluster found on one of my internal mammary nodes which is a node more in the chest cavity.  The internal mammary nodes run on the inside of your breast between your two breasts by your breast bone as opposed to your axillary nodes (the two she took and found the 1 cm tumor on one) which run on the outside of your breast more by your armpit (here is a link with a picture if you want to see a graphic of the two lymph node areas http://ww5.komen.org/uploadedfiles/Content_Binaries/806-392a.pdf).  "It appears to be a small mass," Dr. Byrum said, trying to be reassuring, "but since it is not part of the axillary nodes where the other (1 cm) tumor was found, it may indicated there's more going on then we know.  We will need to do the full axillary dissection now," she said.  Here is another link to show and explain the axillary dissection http://ww5.komen.org/BreastCancer/LymphNodeStatus.html  This meant surgery to remove the all of the lymph nodes by my arm pit--the surgery we were hoping not to have to do if I qualified for the Z11 study.  I asked her if they would remove the internal mammary node and she said no, because of the location and because it was a small mass and the chemotherapy should take care of it.

I took a deep breath and then repeated back to her what I thought she had said so I was sure I understood her correctly.  I had.  Okay, so this was not the best case scenario.  This was not what we wanted to have happen, but it's okay.  We can do this.  I was reassuring myself inside my head when Dr. Byrum said, "There's more."  My heart stopped for just a moment.  "The scan also indicates there is a 10 cm complex mass by your right ovary."  Did I hear her correctly?  Did she just say 10 cm?  Yes, she said it again.  That's basically the length of an iPhone, I though to myself!  She continued by saying they believe the right ovary may be feeding the mass.  "What is a complex mass?" I asked.  "It means we know it's not just a cyst.  It's something more complex which could be cancer, but we won't know until we remove it and have it tested," she explained.  Everything had just become incredibly complex.

I moved to a table in the corner of the restaurant so I could focus better.  She explained once again that this was very unexpected and that this whole situation is very perplexing.  A person with DCIS doesn't generally have invasive breast cancer and certainly not cancer that has spread to three different areas.  Because of the unusual nature of my case, they were going to now take it to the gynecology tumor board which would meet this Friday.  After the board meets, she would set me up to see a gynecology oncologist as well as a gynecology surgeon.  Not only will I now have to have a full axillary dissection surgery, but they will also have to remove the mass and my right ovary.  Dr. Byrum said she and the gynecology team would try to do both surgeries at the same time.  Because ovary tissue is different from breast tissue, they can send the mass and the ovary to pathology while the surgery is happening.  While I am still opened up, pathology will check to see if it is cancer and if so, what kind.  Dr. Byrum explained that if it is cancer, they will then do a full hysterectomy right then while I was still in surgery.  She also said that if it is cancer, they hope it is breast cancer and not some other form of cancer, which would complicate things even more.

"On a good note," she said, "your HER2 results came back negative, so that's really good." I could hear her try to smile through the phone.  "Wow, this changes a lot I guess.  There is no reason to get my port put in on Wednesday if I have to do this surgery now.  What's the time frame on this?" I asked.   She agreed that they could probably put the ports in during the surgery but she would have to check.  Because of the holidays, the surgery probably won't be next week but the first week of January.  "I also want to set you up to see our lymphedema specialist," she said.  Lymphedema is the swelling of the arm that happens in a third of the patients who have axillary dissections.  She said it was precautionary so they could see how my arm is normally in case I develop lymphedema after the surgery.  "I also want to set up an appointment for you to get a genetic test done," Dr. Byrum said.  With the unusual circumstances of my case, she wants to see if I carry the breast cancer gene that is genetically passed down.  Though I have no family history of breast cancer, there are some indicators that my breast cancer may be a result of this gene.  "If your genetic test comes back positive, we will need to discuss having a double mastectomy at a later time."  Wow, that was a lot to take in.  Again, I summarized the facts to make sure I had them all and understood.  A few additional items are:  radiation will probably be required on my abdomen now, but it might be able to be done during the chemo.  If I have a double mastectomy, I might not have to have breast radiation (though I didn't ask Dr. Byrum that yet).  The surgery would take some recovery, so I wouldn't start chemo probably until February now.  The next step, wait for the schedulers to call.

I had to return to the table as I had left my purse and keys there.  I wanted to just run out the door, but I knew I couldn't.  If I left without explaining, the admin team would think the worst and it wasn't right to worry people.  I took a breath, went back to the table, and started to explain my phone call.  Not only had the food come, some had already finished eating.  I guess I was on the phone longer than I realized.  As I hit the highlights with the team, I tried to remain positive but tears welled up and I couldn't stop them.  Saying the words out loud before I processed it all was hard.  They were heart broken as they heard the words.  One administrator offered to drive me home.  I assured them I was fine, I just needed to find Greg.  A principal walked me to my car and I left with a big hug.

I tried to call Greg on the way home but he didn't answer.  I called Trina.  She answered, but couldn't talk.  I went home and didn't really know what to do.  For thirty minutes I began straightening and organizing the paperwork of the cancer notebook I was starting.  Greg finally called and I told him I was home and needed to talk with him.  Despite me being calm and collected, he knew it was bad news.  We sat on the couch and I started explaining everything detail by detail.  By then I had let it sink in and was matter-of-fact about it.  He began to tear up, but he too remained calm.  Part way through, Randall, Greg's dad, pulled up.  It served as a good break.  He flew in and out, chatted with us for a few minutes, then was gone.  I finished relaying all that I had been told.  We can't be surprised anymore.  It is just numb from another shock of reality.  After sitting with Greg for awhile, I drove back to work.  We had a busy afternoon with scheduled meetings and despite trying hard to get the team members together to update them, I was unsuccessful.  Finally, sometime after 5:30, I was able to update Bryan, Duane, Stephanie and Carol.  Dr. T came down as I was wrapping up.  I apologized to him for how I told the admin team but didn't know what else to do.  It was going to be awkward no matter what.  I felt better when he said I handled it with class and dignity and it was a good thing to do.

The genetic counselor called and set an appointment for 10 a.m. on Wednesday since I have an 11 a.m. with Dr. C, my oncologist.  I still don't know if I am having the port surgery on Wednesday or not.  I'm assuming not, but I will put in a call to Dr. C tomorrow.

This is not at all what I expected from the tests, but it is what it is.  I still can't let this get the best of me. Greg and I will hit this head on with full force and a positive attitude.  The mountain continues to get bigger and bigger, but I know we'll be okay.  Preston and Brooklyn both have finals tomorrow so we will tell them after they are done.  Hopefully they are busy studying tonight and in the morning and not reading this post.  On the bright side, I probably won't be bald by January so I will keep my hair another month.  And though the test results definitely made this mountain bigger, we will get through this.  Hopefully those following my journey with me will learn from my posts and I will be a positive influence to those around me.  Though the challenge gets bigger, I will remain positive!