Sunday, June 7, 2009
I LOVE IT WHEN A PLAN COMES TOGETHER
GETTING THE BALL ROLLING
I have been focusing on pregnancy, baby Elena, and family for 18 months. She is almost 9 months old now. Elena is fantastic beyond measure. She is a wonderfully curious and loving child. She is a very good and happy baby. I am proud to be her mama!
Raising a baby while having Cushing’s has been rough on Jonathan and me. I do as much as I can, but he picks up the slack, after working his 40+ hours. He has been wonderful to Elena and me. Through this experience, we have grown closer and stronger both as a couple and a family. In the end, I know that while my house is not as clean or organized as I would like, I know that I have done the one job that was most important. I have cared for my precious Elena every day. She is happy and healthy. We are so close. That’s what really matters.
ON TO SURGERY
The orginal plan was to nurse Elena for three months, then wait three months to have pituitary surgery in March 2009. However, when the time came, we felt Elena was just too small to wean after only 3 months. We adjusted our schedule. I nursed her for seven months, set up my doctor appointments for late May, and weaned her in April. The goal? Pituitary surgery in early summer 2009. (I mention this here because breastfeeding keeps the pituitary active by producing prolactin, the hormone necessary for milk production.)
On May 27, 2009, we traveled to San Antonio. We met with the endocrinologist who diagnosed my Cushing's in December 2007. She sees that my symptoms have continued and my lab work continues to show pituitary disease (high cortisol, high ACTH, low IGF-1=70, low vitamin D=15, rising a1c=6.1). She is willing to follow me post op—partnering with my local endo at home--and is ready to do it if the neurosurgeon is ready. She trusts him completely, and she sends all of her pituitary cases to him. She tells me he is well known in Texas for taking the difficult surgical cases that others say are inoperable… and he gets it done.
On May 28, 2009, I had a 3T MRI. This was the second time I had an MRI at this facility. I was in the same room as before. After the usual prep, I was lying on my back and they moved me into the long tube machine thing.
I asked, “Are my feet showing?”
Tech said, “Yes.”
I asked, “Is this a 3T MRI machine? I don't think my feet stuck out last time.”
He said, “No.”
I said, “My neurosurgeon ordered a 3T. It’s what he needed last time.”
He hit the button to slide me out of the machine and checked the papers.
He said, “Yes, we need to move you to the other machine. It was written on the second page of the order, and there was a paper clip covering it.”
NOTE: ASK QUESTIONS! YOU KNOW BEST, AND YOU CARE MORE ABOUT YOUR HEALTH THAN ANYONE ELSE!! BE AWARE OF EVERYTHING! DOUBLE CHECK EVERYBODY!
Several techs did tell me that my neurosurgeon is the one of the best there at the hospital, and when the other neurosurgeons need help during surgery, they call my neurosurgeon. =)
Ok, so although we were late after the MRI switcheroo (I had to wait my turn for the machine), we met with my neurosurgeon. Still like him. We really, really like him. This is the same one who ordered the inferior petrosal sinus sampling (diagnostic!) and cleared me for surgery in December 2007. He understood our need to try for a baby, and he was so excited when we showed him a photo of Elena. I felt he was really rooting for us. I explained I was ready to get back on the surgery fast track.
He said he read the MRI films on his computer, consulted with their neuroradiologist, and they see two suspicious areas on my pituitary. One is located on the right side, one is located on the left. He couldn’t say whether they increased in size.
The neurosurgeon says he is ready to go in and get the tumors out. HE CLEARED ME FOR PITUITARY SURGERY.
The best part is that the neurosurgeon said, and I quote, “I don’t see any reason to make you go through the hassle of retesting” since my symptoms, lab work, MRI and IPSS results all point to Cushing’s disease. He said, “We won’t find out anything we don’t already know.” If you are a Cushie reading this, you know what a relief that is. Plop plop fizz fizz!
On June 1, 2009, I get the call. Surgery in 10 days!
When: Thursday, June 11th at 2:30 pm (I fast from midnight on!)
What: pituitary surgery (endonasal transphenoidal pituitary resection)
Length: surgery should take 2-3 hours
Where: San Antonio, TX
Hospital stay: 3 to 4 days
Recovery time: THIS WILL NOT BE A QUICK RECOVERY. Doc says we will feel much worse before we feel better. Most patients take 6 to 24 months to feel better. Extended recovery time is not from the surgery but from the hormone replacement process.
Feelings: relief, excitement, anxious. READY.
I know many of you will not be able to contain your outpouring of love and support for me, and you will want to send flowers. PLEASE DO NOT SEND FLOWERS. The surgeon removes the tumor(s) through my nose and sinus cavities. Flowers in the patient’s room are not too friendly to the recovering nose. Don’t worry, an email will do nicely, too.
I’ve added pituitary surgery information a lot of to my Cushing’s website.
You will find all that you ever wanted to know below.
For surgery updates, please check back here often. We will be posting on Facebook, too. We will have proxies post on my wall, so be sure to check there as it won’t show up on my status updates. I will do my best to keep everyone posted. Forgive us if we get a little busy!
So, there you have it. I love that it all worked out according to our plan. I can’t help but smile at my ability to pull all of it off. I have Jonathan, I have Elena, and I have my feet moving in the right direction. All that makes me smile.
Posted by Moxie Melissa