- Thursday, July 28, 2005This is all very sobering and I am trying to maintain a positive attitude. Even though I am a Christian, I am not removed from suffering. Christianity is not about living a victorious, suffer-free life. I still experience an element of God's judgment that occurred through the Fall. Suffering is a part of the world I live in. I have no bitterness or despair toward God about my present situation. For those of you wondering, things are much like a pendulum swing right now. Yes, I do cry. When I found out about the tumor, my first thought was, "Am I prepared to meet God?" I was terrified. Not to be too dramatic, but I cannot put in words exactly how I feel. Sometimes, in fear and weakness, I struggle with unbelief. But Ultimately, what gives me hope is God's grace in Jesus Christ. Here my fear is relieved...I read Romans 5:1-11 last night and it's a comforting scripture passage in dealing with life's trials. Dave and I cannot help but trust that God's hand is in this and this circumstance is not merely chance or misfortune, but it's just part of God's plan for me from birth. Just the anticipation of the outcome is mild torture, though. I am not having this surgery to relieve some agony or pain. My circumstance is quite the opposite...I hardly know the tumor is there. This makes it scarier because I am not presently seeking relief from pain. I will most likely be in pain afterward. So preparing for this is a mental challenge. I trust that the prognosis or results are just as God predetermined. Obviously, it is sensible, and we increase my chances of good recovery and success by going to the most skilled neurosurgeon. Still, the worst could happen with anyone doing the surgery. Dr. Kelly is no miracle man - he is just a man capable of mistakes regardless of his expertise. He can give it his best shot, and do everything right, and things can still go wrong...there's no telling what might happen. Dave and I couldn't sleep last night. We woke in the middle of the night and remembered a few more questions we had that were not addressed when we saw Dr. Kelly at UCLA...When I came out of surgery I'm not sure I was prepared for the emotions that followed. Feelings of bitterness and despair surfaced. I got home from the hospital a day earlier than expected because my recovery was so remarkable. Instead of staying in the hospital the expected 3-4 days I was released from UCLA on the morning of the second day (I had surgery on Friday morning and went home Sunday morning). I was glad my recovery was going well, but frustrated about what I was going through. Inside I was grumbling about the fate that had been given me. My anger was strange, unlike anything I'd ever had before.The feelings began when I was in the hospital. I was irritated at the catheter they put in me and the machines and wires around me. I felt trapped. My level of discomfort was minimal, but waiting to hear if my pituitary was okay was stressful. It required a lot of patience. Recovery also required patience. Any life altering physiological changes as a result of the surgery were still unknown. Everything was uncertain and all the routine stability I had in my life was missing. My life had turned upside down. Although I was emotionally exhausted, I tried to be mindful of the others helping. Trying not to complain was challenging, but I did my best.We stayed with my in-laws in Southern California for a total of three weeks during this time. I had to rely on others heavily for help with the kids. The day after I got home from the hospital, my husband and his parents took our kids to Knotts Berry Farm all day and night. You would think that I would have enjoyed the quiet time and used it to rest, but I couldn't. I felt very alone, scared, and angry. No one was near if I needed help - no one. My parents were understandably busy with their schedules, and everyone went on with their everyday routines...except me.I sat alone in the house, bleeding out the nose, and tried to make sense of the circumstances I found myself in. I felt abandoned even though I knew I hadn't been. In desperation, that evening I called my mom and asked her to pick me up from my in-laws. She and my sister took me to a nearby coffee shop. I tried to keep my chin up, but it was hard to. It was nice to get out of the house. I wanted to get out - even if it was to sit somewhere because I wanted to be okay like everyone else.
Friday, November 03, 2006
Dealing With Emotions
Thursday, November 02, 2006
Looking in the Mirror
"Bear one another's burden, the Bible says. It is a lesson about pain [and suffering] we can all agree on. Of course, some of us will not see pain as a gift; some will always accuse God of being unfair for allowing it. But the fact is, pain and suffering are here among us, and we need to respond in some way..."
Wednesday, November 01, 2006
Waking Up From Surgery
Hours Before the Operation
The night before my brain (pituitary) tumor was removed, my husband and I went to dinner alone at our old-time favorite restaurant, the Market Broiler, in Riverside. Then, after a quick stop at my parent's house to kiss them goodbye, Dave and I left for UCLA. We reserved a room to stay at near the UCLA Medical Center campus. Since my surgery was first in the morning, we thought it would be easier to be close by and not deal with the traffic.
It was a long night. Dave and I tried to sleep but couldn't and didn't. We watched the clock count down every minute. I took a shower, trying to calm my nerves. The light against the stark white bathroom walls was unnerving. I kept thinking about God and wondered what my life would be like in 24 hours...what the outcome of the surgery would be. I thought about my kids. I missed them...I prayed, I cried, and I prayed some more. I was scared. Dave was too. After I got out of the shower, I lay in bed waiting for the alarm to go off, reminding me I needed to leave for the hospital.
We arrived at the hospital and went through the routine paperwork. I had to give a copy of my living will. Dave and I had our wills written about two months before the discovery of the tumor. Good thing I planned ahead...I had no idea I'd be using mine so soon. After everything was completed I waited to be called to the operating room. Dave and I were led to the waiting room, where a handful of other people awaited their call to surgery too. One couple I distinctly remember was a last-minute God-send for me. Their little boy was about to have a serious operation. Their son reminded me of my children, who were heavy on my mind. I wondered if I'd be around to watch them grow up. The mother looked nervous as she took her son to her knee and began to read him a story. Observing their interaction, I continued to think about my kids. I started crying as the weight of everything sunk in deeper. The woman noticed and struck up a friendly conversation with Dave and me. She was a Christian and talked about how she knew everything with her son's surgery was in God's hands. Honestly, I can't even remember what more we talked about, but her words were so assuring and kind that I immediately felt okay again. I was reminded that I was in God's hands. In a moment of utter distress, it's amazing how the kind actions of a stranger can impact you.
Shortly after this, I was called back to dress for the operation. The nurse offered some medicine to help take the edge off my nerves while inserting the IV. I accepted the offer because I NEEDED it! Before I drifted off, I told Dave that if I didn't make it out of the operation, I wanted him to tell the family hi for me and read, Just in Case You Ever Wonder by Max Lucado to the kids. I fell asleep before I could utter the words, "I love you..."
I woke up briefly when entering the operation room. The doctors and nurses were talking to me; I don't remember what they were saying. I quickly passed out again as the operating tools and gadgets were being prepared.
Day Before Surgery
"I feel kind of silly writing a letter in case I don't make it out of surgery, but I would hate to go and be with the Lord and not have any final words to say. Since on this side of the operation it is difficult to know what the outcome will be, I hope this will be a letter we can laugh about and toss in the trash when we get back from California. But if that doesn't happen . . . I wanted to tell you goodbye one more time.All of this tumor stuff has caused me reflect seriously about my past and the changes in my life that have occurred since you and I met and married. This month is the anniversary as to when I became a Christian, August 2, 1992. I would have never thought I'd be confronted with death at such a young age. I thank God he changed my life when he did. God has given me full and complete joy through our marriage, your love, and in raising the children. These truly have been the happiest days of my life...It's an awkward feeling to know that I might leave this life at such a busy time. If it were up to me, I'd stick around. I've got some unfinished work to do! But God's plans are not always what we expect and I hope, in time, you will accept this...I am praying for you now, that God would help you through this time should it turn out to have a tragic ending. Remember, there are no goodbye's in Christ."
Thankfully my husband didn't have to read his letter alone afterall.
Getting a Second Opinion
Acceptance
The doctor did not suspect I had acromegaly once the tumor was found. I first met with a neurosurgeon in Dallas who, fortunately, did not look at me and right away said, "there sits a gal with acromegaly." He didn't order blood work to rule the disease out because he was confident my tumor was not producing excess growth hormone. I didn't LOOK like I had acromegaly; I am 5' 2" and do not have giant extremities or the typical acromegalic appearance. The changes have been subtle and slow. Given another ten years (without the tumor being discovered), it might have been the case that I looked different.
The doctor said if the tumor had not been discovered, I would have likely gone blind or had prominent visual disturbances, which would have led to the discovery. Had it not been for the persistence of my ENT to find the cause of ear pain, that may have been my story. Once I was referred to an endocrinologist, he began to look at little deeper at the possibility of acromegaly. David and I knew before I had the surgery that this was most likely my diagnosis.
Referring back to my previous post about Richard Kiel AKA "Jaws"- I cannot tell you how, as a woman, it feels to look at the person who has always scared the crud out of me in the James Bond movies and find out I am sick with the same disease he has. He looks that way because of acromegaly. I doubt there was a lot of make-up applied to his appearance (except for his silver teeth, of course). Hollywood brought out and played on his most prominent features. I wondered if those were now going to be my most prominent features. Would my face begin to take on a more masculine and coarse shape? Would my hands and feet continue to grow and become huge? I started to look in the mirror and wonder what I would look like in a few years. I thought the changes I was experiencing were a normal aging process. I had no idea a brain tumor could transform a person's appearance. But, it was becoming a reality for me, and I had to accept that I was sick - it was hard to get.
A lot of the blow from the tumor news subsided the night Dave and I nearly got in the accident. So in a way, I was prepared for worse information. Even if it meant I was eventually diagnosed with cancer. Understand I did not have this perfect attitude all the time. I often had moments of "Why me?" but for the most part, I tried not to dwell on it and just took each appointment. The weight of the "what ifs" was too much to bear. They still are at times. Because we are still waiting for more news. It may not be completely gone.
Recalling My Symptoms
Brain tumor - Acromegaly
Aaaa-crow-meee-guh-lee. What is that!?
It's what I have been diagnosed with - I'll explain in a moment. First, a word to my friends and family who already know my history:
I've tried not to inundate our family website with blog entries about my health. Instead, I've been looking for a place (apart from our website) to write down my feelings. I have an urge to share what's happened this past year without wearing out the subject. I hope to be an encouragement to the public or anyone who may be going through a similar situation as mine. This is primarily why I've signed up on this blog.
I was diagnosed in May 2005 with a 2.5 cm macroadenoma and had it removed at UCLA Medical Center the same year. It was considered a large benign tumor located under my brain in the sella turcica (skull base). It was growing against my pituitary gland, between my carotid arteries, and against the optic nerve (the central nerve center for sight). It was found incidentally via MRI when my ENT doctor looked for the cause of chronic ear pain. Lab work and a pathology report confirmed my tumor is "functioning," which means it secretes excess hormones. In my case, the tumor produces prolactin and growth hormone (plurihormonal).
I was diagnosed with acromegaly because of excess growth hormone secretion. In the long run, this could have caused huge problems. Unfortunately, most people receive this diagnosis when clinical symptoms are apparent. The neurosurgeon I initially saw in Dallas said he was sure I would have lost my sight if my doctor hadn't found the tumor when he did.
I'll begin this blog with a journal entry I posted on our family website last year, a couple of days after the tumor was found. I've been thinking a lot about what happened that night, and I find it was no accident that things happened as they did. Looking back, I believe it was God's way of reminding me that he is in control:
- Sunday, May 29, 2005
Okay...so I think the circulation has returned to my limbs, and I picked myself off the floor and am ready to proceed to whatever is next in this illness. I've researched a little on pituitary tumors, and frankly, I'd rather have a couple more kids without an epidural before proceeding to brain surgery...but I suppose we'll have to take this situation and go with it one step at a time.
Yesterday Dave and I went on a date. It's been raining here in Texas and was raining pretty hard last night. We drove into a deep water puddle on the road at about 50 miles an hour. We spun around a couple of times with the tree, telephone pole, and cars in close view. Dave and I were silent through the whole ordeal-not even a scream! In the beginning, Dave tried to steer the vehicle to get control, but then we began traveling backward and sideward into a couple of spins. Dave finally let go of the wheel because we were going so fast and realized he had no control over the situation. He made some remark about that being "FUN." But, of course, it was not my idea of a fun date...ha.
I am fortunate to be here typing something on this blog. Amazingly we stopped in the middle of the road with no scratch on the car or us (Thank you, LORD!) We spent most of our date at Sam's auto shop to make sure the car was okay and eatin' an appetizer of pretzels (sure beats a trip to the hospital!). Reflecting on this little scare we had last night, I've drawn parallels to what happened last night and the news of my tumor. Right now, I think Dave and I feel like we're spinning in the car with all the horrible things that could happen in our view. And we could try to hold the steering wheel and go in a particular direction, but the reality is that this is beyond our control. We'll have to ride it out and pray for the best outcome. Ultimately, my life is in God's hands, and my days are no less numbered than what God had ordained at my birth. I have to trust that this is just part of the plan he had for me. Last night I realized I could die in a car wreck before I die of a tumor. When everything settles, regardless of the outcome, I will be in a better situation than where I am today...