Here is my story, in a nutshell:

Since my preteens, I have had "episodes."  After going to the bathroom, I would be short of breath, face pale, heart pounding, red chest, numbness in hands, tunnel vision, pounding headaches, nausea and vomiting.  I must have told 20 different doctors about these episodes.  One guy told me I was having a panic attack.  Someone else said it was because I had a bladder infection.  I had never had my blood pressure taken during these episodes, so any visit to the dr. showed 120/80 almost without fail.

I got pregnant and had my daughter (natural birth) in 1990 without problems.  I got pregnant again and had my son in 2001, this time when they did the anesthetic for the C-section, my BP shot way up and they couldn't control it.  The on-call surgeon ordered the urine test for pheochromocytoma, but he was off duty for the next several days, and didn't follow up. And neither did anyone else.  Nor did anyone tell me about the test that never got done.

So, I got pregnant again in 2005, and almost immediately my blood pressure started spiking.  That's when I finally got confirmation via urine and blood tests.  So we immediately flew to the Mayo in Minnesota.  By then, I was 22 weeks pregnant.  The doctors at the Mayo said if I continued the pregnancy, I would die because there was a baseball size tumor attached to my bladder.  My son was born March 29 and lived for 2 hours.  A month later I had the tumor removed with half of my bladder.  And then - no more episodes.  They stopped completely.

My next tumor was 2007 at C2.  I didn't go to the doctor when my neck first started hurting, so 8 weeks later I had an MRI, and the vertebrae was basically crushed.  I had been walking around with a broken neck.  I immediately went into surgery and had most of C-2 removed, a C-1 to C-4 fusion with plates, screws, and titanium cage.  6 weeks in the hospital.  I only remember about the last 10 days. 

August 2008, a routine PET scan showed 3 tumors in my lymph nodes in my neck, and one in my pelvis where the first tumor was.  I had them all removed at the same time.  The follow up scan showed 7 more tumors.  The oncologist does not want to keep doing surgery, so we started on Sutent (sunitunib) Dec. 1.  The side effects have been horrible, so we are looking for alternative treatment. 

Do I need to educate my son on what to do if he comes home from school to find me on the floor, or do I have years to deal with that conversation? No one can tell me.  It seems that everyone with this cancer has a different story, with people living one year to 23 years.  No one I've been in contact with has had the same treatment.  Chemotherapy by IV does not appear to be very successful in any story, and the side effects from that make mine look like a cake walk.  My daughter has the SDHB gene, so I need to do all I can now so she can be prepared when her time comes to deal with this nightmare.  My family started going to church again a few years ago, so I have accepted that God has His plan for me.  And I've let Him know I'm going out swinging.