At least I hope I have some answers.
My last health update post was, I realize, rather ambiguous. Or at least party ambiguous. Mostly because it was all pretty ambiguous to me, too.
Prepare yourself for a rather tedious and boring update with some big words and lots of “I don’t know’s” and a hefty dose of discouragement… Now aren’t y’all just dying to read more?
As for info–here’s what I have for ya:
–When did this genetic testing stuff all start?
In February, we went to see a geneticist at UVA (upon recommendation from my oncologist here). I’ve had two breast cancer gene studies come back negative, but they want to look at big picture for me. Basically, everyone is scratching their heads over me, because I am a-typical (no comments from the peanut gallery!). After getting all my records and pouring over them to determine links and see what syndromes they think I should be tested for, they found three syndromes they want to test for. The most serious being the Li-Fraumeni syndrome.
–Why genetic testing?
Knowing what I have (if I have any syndrome) will help doctors know what to look for, help me know what to watch for within my own body, and know what scans I should regularly get, etc. With two of the syndromes we wouldn’t even talk about the kids until they are old enough to determine on their own if they wanted to be tested, too. With the Li-Fraumeni syndrome, we’d want the kids tested right away because they’d need screenings and things before they’re 18. UGH.
All of the testing is optional and may not even be covered by insurance, because I am so a-typical (again, no comments from the peanut gallery!). We are leaning toward testing for the Li-Fraumeni syndrome and waiting on the other two… I’m already being watched so closely, although my docs are beginning to “loosen their grip” and pushing appointments to 6 months apart.
The ball is in our court. Once we decide what route we are going, I will call UVA and start (or end) the process. I don’t know how long it will take. It’s a simple blood test, but there’s a lot of paperwork and processing, too.
–More surgeries? What the heck?
One of my docs recommends two more surgeries, but they are both preventative in nature (preventative meaning, get things out of my body before they get cancer because they are prone to the types of cancer I’ve had). I am beginning to wonder just how much more of my body they can get rid of!
However, upon discussion with one of my specialists on Thursday, she recommends we wait until I get genetic tests back before we move forward with any surgery. If it’s positive, then yes, surgery might be wise. If it’s negative, then the likelihood of cancer showing up in any organ is pretty much the same all around, and since they can’t remove ALL my organs… you get the picture.
That was a relief–just having one less decision off my plate right now. God gave us the clarity we needed, and I am so thankful.
–Am I okay?
Yes. I am okay. I am overwhelmed and discouraged and struggling with the impact of all of this. I know that whatever direction we move on any of this, it’s about trusting God. He is watching over me every day and caring for my body and my heart and my mind and my soul. He’s also given us very competent and wonderful and wise doctors, and part of trusting Him is listening to the doctors He’s brought into my live. (The docs at UVA told me on the phone last week that I have received excellent care and my doctors have not missed a thing with regards to my cancers. Praise God for that!)
I learned on Thursday that my bones are weakening. The chemo put me into osteopenia (the stage before osteoporosis), but my bones recovered some after chemo was over. My last density scan was two years ago. I’ve had a couple more surgeries and a medication change in those two years. I had a density scan on last Monday. My bone density in my spine has dropped 14% and my hips are now in osteoporosis. I had a temper tantrum in my car. Yes, I did. Beating the steering wheel and sobbing, and all I could say was, “I’m not an old lady!”
So, now I’m making MORE changes to my diet and lifestyle and that overwhelms me, too. (Although I am amazed at God’s hand years ago preparing me for now… I changed my major from pre-PT to Health Sciences/Nutrition my junior year in college. Look at His hand, y’all! How much I have needed that nutrition background for my life and my family. Isn’t He amazing?!)
–What do you need, if anything?
Prayer. Encouragement. Support. Truth. This is a big deal. I’m discouraged. Very discouraged. It seems we never get a break. My body is tired and beat up, yes, but the struggle of my soul, exhausts me even more. We are all just tired of the struggle.
I’m a control freak, and it all seems like it’s spinning out of control, although the truth is it was never in my control to begin with. Just knowing the possibility of the syndrome is there could easily drive me crazy. I want to be driven to my Lord. Not driven to insanity b/c I’m not going to Him with it all. So, honestly, y’all can just pray that I cling to Jesus and not wallow in my struggle.
I long for eyes to see His hand in all the little details of my days, and I long for a heart that beats strong in trust and faith and truth. Even looking back over this post, there are so many “look what God did!” moments. I want to live with eyes wide open and blown away by the “look what God did!” moments that fill my days.
Whatever way we move forward, our lives are in His hands. Would you pray for me to find rest in that?
Thank you to those who’ve taken the time to just love me through this new mess… the phone calls and FB messages and emails and hugs and kinds words. Some days I wonder if y’all aren’t just as tired of me as I am, and your faithfulness to continue to support my family and me is… well… wonderful.
I am blessed because of you.