Hey Kathy, you're NED (again)! What are you gonna do now???

I'm gonna go to Disney World!!!!  (I've always wanted to say that!)  I have finished the Valentine mail box and I will blog about it this weekend at some point, but I wanted to take a minute or two or ten to update (and bring up to date) everyone on my roller coaster journey that is metastatic breast cancer.

I'll just hit the highlights of my last five years. I warn you now, it is lengthy.

April 13, 2007: I was officially dxiagnosed with Breast Cancer.  I knew I had it a couple of months before then when I found the lump.  I could feel that is was about 5 cm long, but in reality it was 10 cm long and the cancer was up against my chest wall.  Thankfully, it had not started invading the chest wall. That would have been bad.  I had chemo followed by a double mastectomy on November 30, 2007.  I had the 'exchange' surgery, where they put in the implants, in June 2008.  Mind you--as of November 30, 2007, I considered myself cancer-free and went on a daily drug called tamoxifen. 

Then, in November 2008, after talking to my friend Jenni Smith (a survivor sister) I checked myself for lumps.  Low and behold, I felt one about the size of a pea under my left arm pit.  I didn't tell anyone and made an appointment to see my surgeon, Suzanne Kilmberg.  She got me in a day or so later at 3pm.  I remember asking my mom to pick up Christian for me because I "had some clients coming in late" and didn't know how long I'd be. 

Fact:  I was so freaked out that I needed some retail therapy.  I went and bought my first iPhone.  The rest, as we say, is history.

Dr. Klimberg took out the entire knot right there in her exam room and sent it off to pathology.  I was then told,  by her resident, that Klimberg was going out of town and I would not get my results for a week.  If you know me, you know what my response was.  It most certainly was not acceptable.  I asked him, "Can't the nurses read?"  He said, "Yes," and I said, "Good, then one of them can call me.  All I need to know is whether or not it's cancer."  It was cancer.  I was sick again.  Klimberg sent me for a PET Scan, but was, for the time being, calling it a "local recurrence."

So, I go to my mom's straight away after the biopsy but I can't keep it in.  I had to tell her and my dad that I was not meeting with clients, but that I had just had a biopsy and "Look!  Here's a picture of the dressing table I took with my new phone!"  Imagine their reaction--you are correct--it was just like that that you see in your mind's eye right now.

I had the PET Scan and was found to have three spots on my liver.  It was not a local recurrence.  It was metastatic.  The surgeon said it was breast cancer and my mom asked the question--"What is her prognosis?"  The surgeon (who is NOT my wonderful medical oncologist) looked down, then up, and said, I had a 20% chance of living 5 years.  THAT was a punch in the gut.  I don't do math and was so stunned, I thought it meant I had an 80% chance of living 5 years.  About an hour later, what that actually meant dawned on me.  My mom was visibly upset.  Duh. Ouch.

Meanwhile, I had to tell Zachary and we decided to go get matching pink ribbon tattoos on our left shoulders.

So, before I would start treatment, I insisted on a liver biopsy to make sure it was in fact breast cancer that had spread and not a new cancer all together.  With my history, I thought it was entirely possible.  They did a CT guided biopsy and the pathologist told me right then and there it was BC.  So, onward I marched. BTW--my medical oncologist was upbeat and let me know that we had several treatment options and we'd just go through the list and that some would work for two months and some for ten....he couldn't know for sure, but he did let me know that this was not an immediate death sentence.  Whew!

I did a new chemo combination, two weeks on and one week off.   Bummer alert: It was during this stretch that the chemo finally stacked up on me in such a way that I couldn't work full time and could barley work part time and I was getting behind my bills.  My only option was to close my law office (that was downtown with a great view of the Arkansas River.)  My landlord at the time loaned me my rent money for 2 weeks (Seriously, he loaned me the money so his dad, the REAL landlord, would not know I was paying late.)  I paid him back as promised and gave my 30 day notice.  In August, I moved back home (ugh)  (love you mom and dad!) with the goal of getting out by October.  I'm so fortunate that along this entire journey I have been surrounded by the most caring, helpful and loving people.

I missed my goal by ten days.  I moved into an apartment in Bryant to be closer to my co-survivors, my sister and mom, on October 10, 2009.  Things rolled along quite well for about another year.  In November 2010, as my family was planning a Thanksgiving trip to Florida, I was re-diagnosed again.  Really????  Really.  This time It was back in my liver and a spot on my hip, my groin and pelvis areas. it was hard to tell.  So, I went back on the same chemo and in August 2011, I was (again) declared NED.

Which brings me (finally) to my current situation.  I was ok, NED, in August 2011, so when I went in for my first PET followup, I was not concerned.  AT ALL.  I had previously decided that if it meant I would live another 20 years, I'd gladly take chemo every other year.  This was my OFF year.

So it was, for the second time, like a punch in the gut, to hear that after only 3 months off chemo I was no longer NED, and the cancer was in my liver (again...sigh) and on both hips and three spots on my spine.  Sheesh.  This time, I changed chemos:  One weekly infusion (Navelbine) and one in pill form that I would take one week on and one week off (Xeloda).  As many of you know, this is when I found out I could not afford to be sick bc the insurance denied my Xeloda and when they did approve it, an entire month later, my copay was almost $350/month.  Turns out that those two chemos were too much for me and I was eventually taken off the Xeloda after the first two days of my second month.  (I know, it's a lot and it's confusing....but what you really need to know is not this: It's not the end of the story.)

So, February 3rd was my first PET Scan for this recurrence.  My mom went with me to get the results but I wasn't concerned, I figured the chemo was working and I'd have another PET in 3 months.  DAMN, was it working!!!!  My liver was clear--but my onc was worried about a spot on my spine and my hips--he could tell how they were doing.  So, I had a bone scan...and jumpin' Jupiter--it was clear too!  I was NED!!!!!  After just 3 months!!!  NO EVIDENCE OF DISEASE!!!!

So, long story short--I'm thinking I'll stay on the Navelbine for as long as I can, which means, until the cancer re-appears...but I really am confident that, at a minimum, I will beat the 5 year life span Dr. Klimberg gave me. 

Yes, I will always HAVE breast cancer, it's just that they can't see it---there is No Evidence of Disease but it's not gone.  It's just hiding.  But that also means it's not spreading.  Lemonade folks, lemonade!

Now, all that being said---there are hundreds of stories that go along with this--the kindness and prayers of strangers, the trips taken with family members and good friends, the boyfriend who stuck by me, the support from my sister and mom who saw the worst of this disease and helped me take care of my youngest child when I couldn't.  There is absolutely no way I can thank everyone who has touched my life these past 5 years.  If you are reading this, it's very likely that you have inspired, encouraged, helped or all three in some way or another.

So, I'm going to start taking better care of myself--eating right and exercising (ahem)--right after I get back from Disney World!