Un-compartmentalizing My Cancer

12/28/12--Friday--Day 76--Normal Life Goes On

So I decided to take a break from cancer for the Christmas season--you know, just turn it off and pretend it's not there.  After being in such a bad mood the night of my last visit to the Cancer Center, I just wanted to put my cancer away for awhile.  I updated my blog on Thursday morning before heading to work, which I had to do in order to process information.  This blog has been my lifesaver.  It helps me record what happens as it happens, before I forget it or confuse it; it  helps me share the same information with everyone without having to retell the story a million times; it helps me sleep by providing a place to "off load" all of this stuff running in my head; and it helps me know I am not alone in this battle.

I headed into the office late and called my team together once I got there.  Once again, everything had changed.  Blogging that morning had helped me get back into a better mood about the situation so I was upbeat and tried to be humorous as we talked.  A full hysterectomy meant I was going to be out of the office much longer than I had anticipated, so this was the last day all of us might be together, depending on when they scheduled my surgery.  We laid out plans to move forward with all of the project without me being there.

Later that day, I looked at the CD of my scan.  Several of my team members were there because this was completely fascinating technology.  As technologists, it is amazing to see how technology in other fields is used and this was incredible.  They all watched as slice by slice, picture by picture, we ventured down through my body.  First the inner mammary node cancer showed up in bright yellow, then further down in my abdomen the big, black, glowing moon filled the screen.  The image is the size of a baby's head.  It is black, but yellow shadows glow around it, almost like looking at an eclipse of the sun.  Like me, they too were shocked by the size.  Seeing the images just puts a whole different perspective on the situation.

I finished that day and only had a half day on Friday.  The scheduler called on Friday afternoon to scheduled more appointments.  She tried to schedule for January 4th with two doctors, but didn't have any orders for Dr. Byrum.   Then she was confused as to whether it was for pre-op appointments or surgery, both which would require Dr. Byrum, so she said she would call me back, but she never did.

So that was it.  I was done  We were off for two weeks to focus on what really matters this time of year, family, love and the birth of Jesus Christ.  We had company coming that night and would have a house full for the weekend.  I was looking forward to family, friends, fun and no cancer.  I would put my cancer away for the holidays.

Saturday night we made a big meal.  As we were cleaning up, I started to feel nauseous so I sat down for a bit and visited with my dad who had joined us for the holidays.   On Sunday, we headed to Phoenix for the Cardinals game.  We grabbed a quick bite to eat, then walked around the tailgating parties for a bit before heading into the stadium.  I began to feel super sick to my stomach again.  I tried to go to the bathroom, but that wasn't it.  I sat in the stadium looking pale and feeling nauseous once again.  This was the third time since Wednesday night I felt sick.  Surely I wasn't feeling this way because of the cancer or the tumor.   Cancer was not going to invade my normal life until after the surgery.   It took about 20 minutes of laying my head on Greg's shoulder and closing my eyes before I recovered.  Since then, over the last week, I have realized the nausea seems to follow eating.  Maybe the tumor is now pushing on something.  Maybe the cancer was breaking out of the compartment in which I place it and coming into my everyday life.  Maybe it is all in my mind.  Somehow, it seems to be connected to eating, but not all eating.  Who knows.  I just wanted to keep ignoring it for now but at the same time, I started realizing I can't.

Before Christmas, I put cancer out of my mind as much as possible, but since Christmas has been over, it has crept back in.  The more I go through this, the more I realize I can't keep my cancer compartmentalized like I thought I could.  It has become more serious and more complex than it was supposed to be.  When I started, it was supposed to be a simple, standard lumpectomy followed by the inconvenience of radiation and then it would be over.  I would be done by February.  I asked people not to post on my Facebook wall because I didn't want cancer to consume my life.  I wanted to keep my normal life and just have cancer be something I dealt with on the side when I had to.  This would be done by February and it wasn't a big deal.  I now am realizing my cancer is more "serious cancer" and it can't be compartmentalized.  I can't put it on a shelf and just take it off when I choose to deal with it.  It IS going to consume my life for the next nine months as least, as I am truly fighting a battle for my life.  So I guess it's time to UN-compartmentalize my cancer.  It's time to accept that IT now will control a big portion of my life.  I am going to post on Facebook that this is my new life for now--hopefully temporarily, but it will consume me for awhile.  I figure I better since bald pictures will probably end up showing up there.

As I face reality, knowing the inner mammary node that is cancerous cannot be removed is scary--really scary.  Up until now, each step we've discussed has involved cutting something out then doing chemo to make sure all the cells are gone as well.  Now, suddenly, something can't be cut out.  I know my cancer is still curable--that means everything and has to be my focus, but I am scared.  When I first saw Dr. Byrum, she said it's better to have breast cancer on the right because it is away from my heart when they do radiation.  Now what?  The inner mammary node is on the left, right by my heart.  What does that mean? A new questions to put on my doctor list.

My friend Paula who also is being treated at the Cancer Center went to visit a new specialist in Tucson.  Her cancer is way more serious than mine, but suddenly I have begun to wonder if I should get a second opinion too.  Then I wonder why.  The hysterectomy only makes sense since there is no real reason to save anything.  The axillary node dissection only makes sense since there are at least two confirmed lymph nodes with cancer.  I guess the only real questions is why they can't remove the inner mammary node instead of trying to shrink it with chemo.  But, when you see the picture of it's location, that pretty much makes sense too.  Maybe I am hoping to find someone who will tell me what I want to hear--this is no big deal--but I know I won't.

The genetic testing lab called yesterday.  My insurance had a genetic testig exclusion so they won't pay for the genetic test at all, even if my tummy tumor comes out cancerous.  So unless I want to pay $3,700, I won't know if I carry the BRCA gene or if I should have a double mastectomy or not.  It's pretty silly since it can cost the insurance company two completely separate surgeries, but that's bureaucracy for you.  April is going to write a letter of medical necessity, but I doubt it will pass or be reviewed in time to make the decision for my next surgery.

With that, we are again in a waiting period.   I called my nurse navigator yesterday.  All of the doctors are out this week so we really won't know anything until next Wednesday or Thursday.  That puts my surgery in the second week of January, at the earliest, which is fine.  Cancer may be a big part of my life, but I have definitely learned to play the waiting game and until then, normal life goes on.