It is amazing the tsunami of emotions I’ve experienced since that day… Monday, July 16, 2012. The afternoon a nurse called to inform me, “The MRI scan of your brain taken on Friday, July 13th confirms a micro-adenoma of approximately 5mm in size located in your pituitary gland.”
Ummm, a wwhhhaaattt? Located where? How big? What is a millimeter? Teary eyed I listened intently, “Oh, I’m sorry… an adenoma is a tumor… a benign tumor… micro because it is small. There is no indication the tumor is cancerous.” Oh, thank God!
So what does all of this mean? “Well, the doctor who read your scan doesn’t want to diagnose you, so we need to wait for your doctor to decide a course of treatment. Unfortunately, he is out of the country and due back in two weeks.” Huh? Two weeks? That is f-o-r-e-v-e-r!! **sigh** The nurse was a gem and probably heard the nervousness in my voice. She assured me that my Endocrinologist (a doctor specializing in the endocrine system) was calling into the office periodically while on vacation and she would move my name to the top of the list for his attention when he called. Whew, okay… better news!
The unknowing was incredibly frightening. When I heard the initial news on Monday I was in shock; all I wanted to do was escape my office. When sad or stressed, my happy elixir is always a Starbucks soy latte (preferably Pumpkin Spice, if in season), so I grabbed a co-worker and we headed to our neighborhood barista. I’m so grateful my friend didn’t question me when I told her I needed to get out of the office for a minute… thankfully she joined me without hesitation. On the quick walk across the street I explained the phone call, test results and my overall confusion and anxiety. She was incredibly comforting and supportive.
Upon returning to work with my happy elixir in hand, I began to search the internet for answers. Where is the pituitary located in my head? Is this a brain tumor? How big is 5mm, anyway? Do I eventually have to have surgery? If I do will the neurosurgeon go through my brain? What is the recovery time? My Google search proved fruitful and I soon learned the pituitary is located right behind the eyes, is about the size of a kidney bean, and is attached to the brain stem. So my tumor was not a brain tumor because it was not inside brain matter. Whew! And from what I could tell 5mm was about the size of a mustard seed – super tiny… indeed micro.
Over the next five days, I experienced the five stages of grief… one by one… each day. Tuesday = Denial and Isolation, Wednesday = Anger, Thursday = Bargaining, Friday = Depression and Saturday = Acceptance. All the while, I shared my diagnosis with a few close friends. I needed time to process this medical nonsense and understand the treatment before I broadcast the news to everyone and their second cousin. Which, knowing me… soon everyone would know. Ha!Luckily, I didn’t have to wait long before receiving a follow up call on the afternoon of July 26. The same nurse explained, “Your doctor called and wanted me to let you know that surgery is not needed and he would like to start you on ‘xyz’ drug. We’ve already called the prescription into your preferred pharmacy. We will see you at your next appointment during the first week of October.”
Now armed with the treatment decision, I still had more questions… What is the drug? Is it a chemo-type pill? What does this drug do? Is it covered by my insurance? How expensive is it? Are there side effects? How long do I have to take it? Why is a drug the answer and not surgery? I have a foreign body taking up residence in my head… don’t we want to remove it? Yes, so many questions swirled through my mind, but for some reason no words actually made it out of my mouth. The nurse hung up before I could get any answers.
Again, I turned to my trusty computer for answers. In a matter of minutes, I discovered my tumor (called a prolactinoma) is the type of tumor that secretes a hormone called prolactin. These types of tumors are treated with drug therapy. The other type of pituitary tumor does not secrete a hormone and must be surgically removed by going through the nose and sinus cavity. The ‘xyz’ drug was covered by my insurance and would cost about $300/mo for five pills. I only take ½ a pill two times a week. I’m not a fan of another $300 bill added to my monthly expenses, but it is doable. I have affectionately called ‘xyz’ my “super-power-kill-a-tumor-drug” Ha!
The super-power drug does not come without some pretty heavy side effects. Everything from the basics: vomiting, nausea, and constipation to the more intense: mood swings, depression, aggression, and hallucinations. I’m happy to say I have neither vomited nor experienced hallucinations. Everything else I’ve experienced. Fun! Every day I wondered who will I be today? Angry Renae? Elated Renae? Depressed Renae? Apathetic Renae? The mood swings were dramatic and changed day-to-day. I figured it was time to share my news, so people didn’t think I was having a nervous breakdown. And, I wanted people to watch me. If I started hallucinating would I be lucid enough to recognize it? Who knows?
As I started to tell friends, family and co-workers the support was overwhelming. I’m grateful to everyone for their support. A few friends actually took me out for happy hour to “toast my tumor” one night after work. It was phenomenal to have so many people rally around me. My parents were the last to know. I had a feeling they might panic, so I needed to make sure I was emotionally okay with the diagnosis myself before I told them. That way, I could be strong and support them, if necessary. Thankfully, they handled it well.
At my three month checkup, my Endocrinologist told me that my recent blood test results indicated the super-power-kill-a-tumor drug was working. My prolactin hormone level had fallen from 32 to 4.2 which was now within the normal range of 3 – 19. Yah Rah!! My excitement quickly faded as he went on to tell me that I will be on this ‘xyz’ drug for two years and my next MRI will be in June 2014. What? Really? Ugh. Yes, and I will be subjected to blood tests every three months to ensure my kidneys and liver are not negatively impacted by the drug as well as monitoring my hormone levels. If my MRI in 2014 shows that the tumor has shrunk or been eliminated then I can stop taking the ‘xyz’ pill. Yet, I will still have blood work and visit my doctor every three months to ensure the tumor doesn’t return.
One day a dear friend mentioned, “You know there is a bible verse about a mustard seed – something about the faith of a mustard seed.” So, I looked it up. Matthew 17:20: He said to them, “Because of your little faith. For truly, I say to you, if you have faith like a grain of mustard seed, you will say to this mountain, ‘Move from here to there,’ and it will move, and nothing will be impossible for you.” Wow…
Do you know there are 27 verses in the bible which reference a mustard seed? Hmmm… I guess this little mustard seed-sized tumor holds my lesson(s). Not sure what lessons quite yet, but I decided to look at this diagnosis as a blessing. For years, I knew something was wrong. I ate right, worked out vigorously in boot camp with a personal trainer and never lost an ounce of weight. After nearly a decade, finally the FIFTH doctor I visited in search of an answer found the tumor. I’ve learned that the pituitary is the central hub for hormones and if one hormone is out of whack, then every hormone in out of balance too!!
Now, I refer to my tumor as my lil jelly bean and I envision she is hot pink and in the shape of a heart!! The jelly bean is my friend and she has probably been with me for nearly 10 years. All-in-all, I’m pretty lucky. Yes, lucky. My tumor is not cancer. Surgery is not required. The tumor is small – tiny actually. There is a drug available to treat it and I have decent insurance coverage to take care of the expense. I finally have answers.
Soon, the weight should drop off too. For all of this I’m thankful. My Daddy summed it up pretty well, “You kept at it. You knew something was wrong… and doctor after doctor… you never gave up. Yes you spent a lot of time, money and effort over the years trying to figure out what was wrong, but now you finally have answers.” Couldn’t have said it better myself. Amen!
By the way, ‘xyz’ does have a name, but I didn’t want to get all medical jargon technical. Ha!
© Renae Rossman and Candy Coated Reality™