Tuesday, January 26, 2016

Ava's sweet story

It's interesting to be monitored so closely. I imagine that if everyone had routine scans and tumor marker blood work and all the other random tests I have done, most people could relate to what I have gone through and will continue to go through indefinitely and most people would have occasional "things" show up that are benign. I recently had blood work run looking at all sorts of things but I was most interested in 5 tumor markers and 1 urine test.  CEA, CA-125, CA19-9, Chromogranin A, Serotonin and 5 HIAA (the 24 hour urine test) CEA and CA19-9 are broad GI tumor markers, CA-125 is pelvic/abdominal and Chromogranin A, Serotonin and 5 HIAA are all specific to a Neuroendocrine Carcinoid.  Great news is that CEA, CA 19-9, CA 125 were all "normal" and the lowest or close to the lowest they have ever been.  As for the Carcinoid markers,  2 of the 3 are VERY sensitive and can give a false positive from eating a variety of foods, drinking alcohol, tea, coffee and taking certain medications.  I do my best to stay away from the restricted foods (like avocado, banana, walnut, tomato, coffee, etc) but it's difficult AND they don't know everything that gives those false positives.  The Serotonin level and the Chromogranin A level both came back in the normal range and are both blood tests.  The 5 HIAA 24 hour urine test came back slightly elevated.  Normal is <6 and mine was a 10.  My local oncologist was certain that it was a false positive so I didn't freak out... until a couple hours later.  Luckily my freak outs now a days are very controlled and non emotional but I've been battling fear, again.  I understand that things will show up occasionally and that it is most likely nothing!  But it's hard to not have a min pity party that I have to deal with this.  I'm blessed with this amazing life that is currently the best it's been and I selfishly don't want any speed bumps.  Dr. Blanco, my local oncologist wants to wait and retest in August when I have my next scan and recheck for all of the other tumor markers. Surprise, Surprise, I've decided to get a second opinion.  I made an appointment to meet with Dr. Strasberg at Moffitt.  He is the Carcinoid specialist I met with after I was diagnosed and he is one of the best Carcinoid doctors in the USA.  I just want his opinion before I sweep things under the rug for 7 months.

Life has been so great though.  December was so much fun.  It was my first holiday season in years that I didn't have to deal with a scan, blood work or anything medical and I got to enjoy the festivities.  I had my munchkins this year on Christmas Eve and Christmas Morning.  They both woke up at 3:45AM on Christmas morning so we opened presents when most people were sleeping.  It was really cute.  January has flown by and was also full of fun.  This past weekend Ava and Liam met the man I've been dating  (J) and Ava did the sweetest thing I have ever seen.  We were at Busch Gardens eating lunch.  J loves Busch Garden's bread pudding, so I tried one bite of and didn't like it.  When he asked why, Ava immediately said, "I know why".  She turned to me and said, "Mommy, may I tell him your story" and I said, "of course".  She then said, "When Mommy was younger she didn't eat organic and ate a lot of sweets and sugar.  And then she got the cancer  She was very sick and very sad.  But now, she eats organic and doesn't eat sugar or sweets very often"  J said, " and now she's all better" and Ava said, "yes".  My eyes filled with tears.  It was really emotional to hear her perspective of what happened and that she remembers despite it being 3 years ago and her being 4 (almost 5) when it all happened.  I hate that she has that memory but I'm so thankful that we've had 3 more years of happy memories and many, many many more years to come.