"I am well."
These are the words I say when I'm asked, "How are you?" I decided this would be my steady reply to any who would ask because if I were to say how I am really doing (health-wise), there would not be enough time in that moment to answer in detail.
For the last ten years, my posts frequently included a victorious shout, "All hormones are normal!" Now, this is changing - but why complain? After all, my tumor is shrinking, and hypopituitarism is treatable. I don't know how to write without sounding upset or defeated. I know this is really common, but I'm disappointed. Before I began radiotherapy, I was told my hormones would decline due to the treatment, but I remained hopeful (or in denial). After all, my gland survived two major surgeries, and I thought maybe Proton Beam Radiation would somehow make a difference in the longevity of my pituitary function, too. I remind myself this was not the reason why I went to MD Anderson, for it was the tumor, not an excess hormone, that threatened my vision and the structures in my brain. At least, it appears the radiation treatment was not all for naught and has shown to be effective in stunting the growth of my tumor. Also, I can safely say I am in remission from acromegaly (I have been for years). My IGF-1 level, now 58, continues to drop, so at this point, it appears I will not have to deal with excess growth hormone again. Ironically, now GH deficiency is a concern, but I will not be taking GH replacement.
When I joined a pituitary group several years ago, I read stories from people regarding a delayed diagnosis of a pituitary tumor and the difficulty of living with hypopituitarism. Yet, I could not relate because my hormone levels were normal. I wrote about the fear I had anticipating brain surgery. Never mind how benign, and treatable a pituitary tumor is; the thought of a knife going into my head was terrifying. But, hypopituitarism was not on my list of troubles. For anyone new to my blog, I recommend joining a support group or keeping a journal about your experience. One of the things I appreciate about the Acromegaly Community and other pituitary groups is how many people from different walks of life can come together on this topic of pituitary disease and connect with the idea of bringing awareness and helping others. There is a common thread of struggle and empathy among pituitary patients. I've learned a lot and am grateful for those who have shared their stories (AcromegalyCare) and the doctors involved in support groups like the Pituitary Network Association. Their encouragement and resources have enabled me to deal with what I'm experiencing today. Their knowledge has given me the ability to communicate with my doctor and understand as best I can what is happening with my health (Informative video - "Understanding Hormones and Their Effect on Quality of Life").
I'm still running a couple of days a week, and overall, I feel alright despite the changes. The hormone therapy helps my energy level. My kids and life, in general, keep me active and busy. I remember where my heart was at the beginning of this journey, after my first brain surgery in August 2005. I am thankful to God for carrying me through and reassuring me by his Word that even if my tumor grew back, and all efforts to save my pituitary gland failed, his grace is sufficient (2 Corinthians 12:9). In this promise, my hope remains. Listen: Why Suffering?
"When peace like a river, attendeth my way, When sorrows like sea billows roll Whatever my lot, thou hast taught me to say It is well, it is well, with my soul..." - Horatio G. Spafford
