grounded

The Doctor eased into the bad news a little better than I did for you here.  He was professional and kind when telling us what were up against, and what we were going to do about it.

IL-2 produced some pretty amazing results, I don't think any tumor that was there at first (in January when if popped up everywhere) is anywhere to be seen.  Nothing on the bones is 'lighting up' on the scans, and the liver spots are almost not there.  Strangely, there is really nothing new in any of the organs, except the most important one.

It has been 4 weeks since I did IL-2, the washout period you need to get into a clinical trial.  I was really hoping that I would have those options.  Brain mets (I will be using that term lots, short for metastasis) in this quantity pretty much disqualify you for anything.  Our goal is the get them stable (prove they aren't growing) so we can qualify for a trial down the line.

To do this we are going to start early next week with IPI (Yervoy) and Temodar.  Temodar is a chemotherapy that has the ability to cross the blood brain barrier.  It may (I don't know the odds here, 20%) help keep the tumors under control while we wait for the IPI to kick in.  IPI normally takes 12 weeks to work (I'm not an expert this is just what I am piecing together).  From what I have read, the median survival after being diagnosed with brain mets is 3 months.  Yeah, not so great math.  And usually you are talking a few brain mets, I don't know the statistics on 25.  The temodar effects only last a short time, but maybe enough to give time for the IPI to start working.  We are hopeful that because I had an immune response to the IL-2, that I will have another with IPI.  IPI does not cross the blood brain barrier, but if you can get your immune system to go after melanoma, the T cells that attack can get to the brain. 

Braf drugs.  Would be an option right now, but while the mets are so small, and we know my body can fight the cancer, we are waiting till the last minute for that one.  I would rather do treatments that have a lasting effect (IPI) while I can.  The Doctor thinks the Braf drugs work in about 40% of brain met patients.  So there is not even a guarantee there.

I was strong during the explanation.  Mostly I was shocked.  Really, I never thought it would be this bad, this fast.  I started crying only when I asked about driving.  Seizures are a common symptom of a brain tumor (although he thinks I won't have symptoms yet, with tumors this small).  He recommends I do not drive until we get this under control.  If I were to seize while driving I could do harm to those I was driving, and those in my path. 

Yup, I'm grounded.  For life, really.  And that is the what made me cry.  Not the 25 tumor in my brain part, or the probabilities part.  Not when they pulled my PET scan up and showed me all the little places around my body the cancer was hiding, or the side effects of the drugs part.  Not even when I realized that this is such a long shot.

Just when they took away a little freedom.

I am a pretty spontaneous person.  I don't love to plan.  My favorite mornings are always when I wake up and get an email from google calendar that says "you have no events scheduled today."  I don't like to plan a trip, really till I'm there.  I like to go to the grocery store and just see what inspires me.  I love to drive my kids up to the mountains.  I love to get away by myself in the car and blast country music from the 90s.

Sure, I can get along without a car.  I know everyone will help me.  It just stung.  And it changes things now.  I will rely on friends and family until we can get a nanny hired.

*****

Friday morning, right before all this happened, Josh woke up at 5.  He propped his head in his hand and stared at me for 20 minutes before quietly slipping off to work.  "I loved it.  You looked so beautiful." 

I woke up a couple hours later and rushed to get out the door to be at the hospital on time.  But I froze when I went to brush my teeth.  I saw someone who would soon meet her greatest fear, times 25.  I had no idea, but it seemed like my mirror image knew something.  She looked like a warrior princess waiting to attack.  Beautiful and calm.  Full of determination and strength.  "You can do this" she told me.

I was reminded of the day I learned my cancer had spread.  5 years ago.  A similar recognition and encouragement from the girl behind the glass.

I have never seen that pre-cancer girl again.  Although it would be fun for a while, I do not want to be her.  I want to see the warrior woman who has fought and conquered.  And I want to see her for years and years.

Tonight.  Hard to believe I am anything but healthy.  No symptoms.