Saturday, April 13, 2013

Wait....I have what?

Life has been pretty crazy lately.  I've testified twice in Springfield this year trying to get a teen tan ban passed statewide for Illinois; we have taken in our grandkids as our oldest daughter fights against another beast (alcohol addiction); we've been pretty busy with plans for our younger daughter's upcoming wedding and having a blast doing it; friends have had scary health stuff going on, and then the usual day in-day out of normal life for our family.  But life for a melanoma patient is anything but normal when scan time rolls around.  Even so, I dutifully scheduled my regular PET scan for April 1 and my brain MRI for April 2.  Oh yeah, and I'm due for a mammogram so let's get that out of the way too.  Had that done right before the PET.  I made an appointment with my oncologist for results on April 3.  

On April 2, the Breast Center called and said there was something on my mammogram they hadn't seen before and would I please come in for a second mammogram on April 3. Sure I said, I can "squeeze" (hahaha) that in right before my appt. with my oncologist.  After the second mammo, they said I needed to have the area of concern biopsied.  Great.  Just what I needed.  

So, I mosey down the hall to Kellogg to see my oncologist.  Blood draw, vitals, yada yada yada, and then I'm shown to an exam room to wait for the king of melanoma docs (in these parts anyway).  He comes in, sits down, and asks me how I'm feeling.  I start blathering on about how irritated I am that I have to have a breast biopsy like I don't have enough on my plate, and I realize that he has an odd look on his face.  That look stopped me mid-sentence.  I said "What?"  He hesitated, and then said "Your MRI."  Oh, my God.  The room is spinning.  Then his PA, Tiffany, comes in and I can see that she has been crying.  Brockstein says, you have a tumor in your brain, maybe 3.  We're not sure.  I want to run.  I want to throw up.  But all I can do is say f*ck over and over. I will never, ever forget that moment. And then I started to cry.  After a couple of minutes, I pulled myself together and said "Okay.  What do we do about this?"  We have made you an appointment with a neuro-oncologist for tomorrow so that you can discuss your options.  He told me he would be aggressive, that he would fight for me.  I said you better, because I'm not going down without one hell of a fight.  I have a family.  I have a life to live, and I'm GOING to live it.

Then it dawns on me that I have to make those God-awful phone calls to my family...again...and tell them that the melanoma is still sneaking around in my body and has landed in my brain this time.  This is harder than anything.  

I have so much anger.  But it's all directed right smack at me.  I waited to get that thing on my back checked out.  I KNEW what it was, and I was terrified, and I just couldn't go.  But now that fear and that failure on my part to go see a damn doctor is costing my family...and costing them big.  It's costing them tears and heartache and fear, and that is killing me.  Because I did it to them.  I try not to beat myself up.  After all, I can't change the past.  But it's hard, because I love them and to know that I did something that hurt them is almost more than I can bear. forward to neuro-oncologist.  He's a nice guy.  My sister, Claudia, is awesome enough to come with Jimmy and me and take notes so it won't all be a blur later (thanks sister...xoxox).  My tumor is in a "good" spot.  There are two more very small spots, but they were also on my prior MRI, so they might not be melanoma.  But they might be...and the ipi is keeping them small.  They'll watch them.  Neuro-oncologist refers me to radiation oncologist to talk about the ins and outs of stereotactic radio surgery.  Then radiation oncologist has me meet a neurosurgeon, and we talk about the possibility of conventional surgery to remove it.  It would be easy to "pop out" he says, but feels SRS is best.    

The consensus is that SRS is the way to go.  My research says that's the way to go too.  So Monday, I will go and have one of those crazy masks made, have a CT and an MRI, and then a team of crazy over-achiever types and some incredibly complex software will plan my SRS, and on April 22 they'll zap the hell out of the stupid melanoma that's taken up residence in my brain.  

Aside from my daughter's upcoming marriage and the thought of little Biddles running around, and my older daughter conquering her addiction, I can't really think of anything that would mean more to me than that teen tan ban being made law in Illinois.   

For anyone who might be reading my little blog for the first time, please know that spending lots of time in the sun and in tanning beds is what got me Stage IV melanoma...but you can prevent ending up in this position.  Use sunscreen every single day, and for God's sake stay out of those tanning beds.  They're really coffins with UV lights.


  1. I'm saying "f**k" right along with you. I always bitch about people not knowing the right things to say, but when it's your time to find the words, the right words simply do not exist! All I do know is that melanoma has no clue who it's messing with. Thinking of you and your family, Donna. Hugs.

  2. Thinking of you. You are always in my thoughts and prayers. You are a force to be reckoned with and melanoma has one hell of a battle on his hands! Stay strong XO

  3. D, I love you so. I'd like to stay & visit, but I have to go drench myself in SPF kabillion.