IGF-1 Climbing?

Since my surgery I have had (low) normal IGF-1 labs; because of this, it has been assumed that I am in remission from acromegaly. It seems the surgery was successful in removing most (if not all) of the tumor. However, my most recent MRI mentioned there was possibly residual tumor in the left cavernous sinus as well a developing mass on the right side of the cavernous sinus. My most recent IGF-1 was up a bit from 129 to 202.

Even though my Somatomedin-C (IGF-1) is considered normal, the result is higher from my previous reading 5 months ago. I asked my doctor if the fluctuation of my IGF-1 is normal or if this was an indication that residual tumor exists. He said it's hard to know for sure, and requested the glucose suppression test to be sure.

Growth hormone is supposed to supress below 1.0 ng/mL after my body is loaded with 75g of a glucose drink. Here are my results:

Baseline GH is 1.55 ng/mL
30 min 0.55
60 min 0.23
90 min 0.20
120 min 0.25

As you can see, my GH is completely normal. If there is residual tumor in the cavernous sinus, it is not producing excess hormone - this is great news!

Preparing for Another Surgery

Well, the surgery date is set. June 15th I'll be back in the operating room at UCLA to have the titanium mesh removed. I heard from my neurosurgeon. He's not sure there is residual tumor or new mass - he's going to compare my MRI's and get back to me on that. I will have blood work done because if there is a tumor, it will likely show up in the labs, so that will give me some insight into what (if anything) to prepare for. The most recent blood work (6 months ago) was completely normal, so I would be surprised if it weren't normal. As far as the surgery goes, if I have a CSF leak again, it will be repaired with a fat graft, and the titanium will not be placed back in my head.

This surgery is not as significant as the last time I went in - they won't have to cut through the dura of my brain but will be working below it. However, I'm still wrestling with having to go back under. This is an inconvenience - but life is full of inconveniences. The world seems to have no place for suffering - even though it is always present and around us. I know I don't have time for it! Comments such as, "Get-well soon..." are expressed even when someone will never get well. When a person has been handed a life of suffering - what do we say then? Naturally, we hope for the best, but words are difficult to find in these moments.

My grandfather was diagnosed with a rare form of cancer several years ago. He struggled with the disease for the remainder of his life; his last couple years revolved around weekly hospital visits and blood transfusions. He fought to get well until the very end. Death inevitably came. He died the day after I had my brain tumor removed. However, he used the final days of his life wisely. Instead of continually wallowing in self-pity (not that he never did - I'm sure he had his moments), he took the time to reflect on his life's happenings. He wrote a book recalling his life's personal highs and lows, ultimately defining who he was. He accepted his fate with dignity, and he found good even in suffering.

A source of encouragement for me has always been the life of Job in the Bible. He was given tremendous suffering - NOT that my life parallels that. When prayers are not answered in a way we desire, some people may think the suffering automatically must be some punishment from God. Perhaps it is not quite an issue in other countries. Still, in America the Gospel is often incorrectly promoted as a means to health, wealth, and happiness - this does not face the reality that Christians suffer as non-Christians do. Job's friends came around telling him he needed to repent because God had laid the problems in his life because of some unseen sin, but we read that God is sovereign even over Job's trials. As cruel as it may seem to some people that God would allow suffering - he has promised there is always good that can come out of it (Romans 5:1-5). We cannot escape disease or sickness - the world is full of it.

Last time I went through surgery, I thought my struggles were over for the most part - or at least for a while. I'm mindful that I may not remain infection-free or stay in remission forever. Either way, I believe the outcome is ultimately in God's hands. My prayer is to be content with whatever lies ahead, even if the prayers are not answered the way I hope they would be.

Update: Surgery is Needed

I received a phone call from UCLA today and have received a copy of my MRI report...here's the results:

IMPRESSION:

1. SINCE 5/25/05, THERE HAS BEEN INTERVAL RESECTION OF THE LARGE SELLAR AND SUPRASELLAR MASS MOST COMPATIBLE WITH A MACROADENOMA. THERE IS SOME DECREASED SIGNAL INTENSITY ON T1 WHICH IS NONENHANCING WITHIN THE LATERAL ASPECT OF THE LEFT CAVERNOUS SINUS WHICH COULD REPRESENT SOME RESIDUAL MASS. THERE IS ALSO A PROMINENT FOCUS OF ENHANCEMENT NOTED POSTERIOR TO THE RIGHT CAVERNOUS INTERNAL CAROTID ARTERY WHICH WAS NOT DEFINITELY IDENTIFIED ON THE PRIOR STUDY . THIS MAY REPRESENT SOME DEVELOPING MASS. ONLY SERIAL STUDIES CAN DOCUMENT STABILITY

2. T1 AND T2 PROLONGATION NOTED WITHIN THE SPHENOID SINUSES BILATERALLY WITH THE LEFT SIDE SLIGHTLY MORE INVOLVED THAN THE RIGHT. THE RELATIVE CONTRIBUTIONS OF RESIDUAL POSTOPERATIVE CHANGES AND PARANASAL SINUS DISEASE IS DIFFICULT TO DETERMINE.

Dr. Kelly wants to remove the titanium mesh and drain the spenoid sinus of any infection. As far as the residual tumor in the left cavernous sinus, I knew that was always a possibility. However, the developing mass posterior to the right cavernous internal carotid artery is new and I will discuss this with Dr. Kelly to see if he agrees with the findings - I'm hoping it's nothing more than post operative changes.

My New Glasses

This blog expresses some very personal feelings I and others with acromegaly face, and it is not intended to draw sympathy or pity. I'm merely writing about this because I deal with these feelings daily as I look in the mirror. What I'm talking about is the question of how do I deal with the persona of acromegaly? As I mentioned in a previous blog, accepting that I have acromegaly was difficult and still is sometimes. New glasses were put on the day I found out I had the disease, and it has been challenging to remove those glasses ever since. Although I know I do not have the severity of facial distortion that can occur with acromegaly, I often see myself that way.

I recently had a discussion with my husband about the effect this disease has had on me and how I perceive my appearance now. I don't have any answers on how to deal with this, but I notice it's a common thread among some people with the disease. My self-image has changed, and I'm not sure what to think anymore. I never really had a problem taking my picture until I was diagnosed with this disease. Now, I can hardly find a photo of myself that I like. I was sifting through pictures to post on this website and I wouldn't say I liked any of the recent ones I had.

As a woman, I desire graceful facial curves and a softened appearance. Acromegaly can change that, or at least it started to in me. I know that it's subtle, but what I perceived to be normal aging was changes due to the disease. My skin began to toughen, turning oily and puffy. My forehead and jawline began to widen slightly. There are photos I have where the acromegaly is obvious. One of them is the image I posted in my before and after photos (taken a month before surgery). I have it posted because I know there may be others confronted with this and searching to know how much or little it could change them, too. Many people with acromegaly are diagnosed when the clinical signs are apparent; however, my appearance is not peculiar that a doctor could look at me and diagnose the disease. This is comforting in many ways.

While I am bothered by the changes that occurred, my symptoms improved after my tumor was removed. A lot of the swelling and puffiness diminished. I remind myself that the glasses I now wear may not be the ones everyone else has when they look at me…or are they? Mental challenges come along with the diagnosis, and I think that the loved ones of people with acromegaly need to understand how they might perceive themselves. How do I define what I look like now? I see myself permanently altered by acromegaly and wonder if it is as apparent to others as it is to me. Will I change any more in the years to come? I don't know. In the meantime, I live with the knowledge that the glasses I've acquired came about because of the diagnosis of the disease, and they can be removed when I try...

Before & After Photos

Click on the picture to enlarge

Acromegaly can change a person's appearance (due to excess growth hormone) over many years. My endocrinologist asked me to put together a picture collage of photos dating back about 10 years. Although it's hard to pinpoint exactly when my tumor started to grow, the doctor suspects changes began (possibly) around 1999.

Dealing With Emotions

Photo taken August 2005: Less than a week after the surgery - my husband tells to "smile" as he takes a picture.

Something I haven't written about yet is the anger I experienced in the days following the surgery. I think it's important to write about this because the emotional impact in dealing with the tumor, surgery, and the uncertainty of the outcome can be difficult.

My step-dad told me he was amazed at how strong I appeared on the outside during this whole ordeal before the surgery and afterward. He said he knew I just had to be very scared inside...he was right. When I first heard about the tumor I was completely numb. The fear that went through me is indescribable. Saying I was shocked would be an understatement. For the most part, I tried to stay calm, but when I sat a while and thought about what I was facing, I cried uncontrollably. There were many nights when my husband joined me in tears. Here's an excerpt from a blog entry that I wrote after I had met with Dr. Kelly in California and decided to go to UCLA for the surgery:

- Thursday, July 28, 2005

This 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.

One week Post Surgery - Click to Enlarge

I can't really put my finger on any one thing that made me upset, just that I was. I dealt with this in my own way, by just trying to ignore my feelings and act contrary to how I felt. In reality, this was probably the best thing for me to do at the time. I might have lashed out and said things I didn't mean. I'm sure I am not alone when I speak of the loneliness and anger I felt through this. I accepted my fate from the beginning, but once it became a reality and the surgery was done, I grew impatient, waiting for the results. I wasn't keeping in mind that my husband's world was also upside down. Although he didn't go through the surgery, he was feeling the effects of it too. He just didn't have time to show it. We were thousands of miles aways from our home, stuffed in someone else's house with our three kids and trying to maintain normalcy. Everyone who helped devoted their time willingly, and their lives were interrupted too. Before the surgery, I was determined to make the best of the situation and remain upbeat but I had no idea how difficult that would be...accepting this change of life was not easy. I was bitter even though I went through it with a smile.

The anger disappeared as days went by. With each doctor visit I received good news that the surgery may have been successful. After a few weeks, life got completely back to normal and I wasn't mad at the world anymore. I chose not to stay angry, although I still struggled to accept my uncertain future with contentment. Maybe a lot of the anger was due to hormones and changes that occurred as the pituitary dropped back into place? I don't know...but I doubt it!

Looking in the Mirror

I wasn't sure what to expect coming out of surgery. Would I have the worst headache of my life? Would I vomit from the anesthesia or would my eyes turn myriad shades of purple and my face swell to abnormal proportions? Those thoughts frequently went through my mind before the surgery, but they disappeared the moment I awoke. Somehow, as uncomfortable as I felt post-surgery, I saw the pain and discomfort as a good thing...I was alive.

As the anesthesia and other medicines wore off, I understood my hospital room's surroundings a little better. I managed to find a mirror and look upon my reflection. Out of the corner of my eye, I noticed my roommate lying next to me. She was an older woman; her head was bald and marred with bloody bandages by the recent surgical procedure she'd had done. She appeared to be in a lot of pain, but her family visited her often, which seemed to take the edge off of things. Each time I looked in the mirror, I could see her and was reminded things could be worse. I began to feel sad for her as I brushed my long, thick blonde hair. Glancing into the neuro-surgery ward, I saw people with ailments similar to my roommates. One young girl I distinctly remember must have only been about 16 years old. She had some massive contraption on her head, which resembled Medusa's hair. It was a very sophisticated device that balanced atop her head as she moved slowly down the hall arm in arm with the nurses.

As standard procedure, I was constantly asked a series of questions to ensure my mind was still working correctly and I wasn't showing signs of brain damage. Every time the doctors made their rounds, they asked me the same questions: Who are you? Where are you? Why are you here? What day is it? Where were you born? It was a subtle reminder about the magnitude of the operation I had recently had. I was only in the hospital for two days. I was released from the hospital a day early because my recovery was going better than expected. The morning I left UCLA, I received a new roommate. She was a lovely young woman about the same age as me. She mentioned that life was completely normal until a couple of days earlier...she had survived a brain aneurysm. It caused the entire half of her face to swell up. She mentioned she had hoped to go home early, too, but the doctor had just come in and broke the news that her recovery was not going as expected; she had to stay longer.

A couple of weeks after I returned home to Texas, I overheard some disc jockeys on the radio laughing as they tried to coerce each other into some fearful task that they didn't want to do. One man said to the other, "It's not like I'm asking you to get a brain tumor removed!" When I heard this, I stopped and thought about that comment. I just had a brain tumor removed...what was so hard about that? I realized that most people would never experience such a thing. The flippant remark summarized the description of what most people would think is a terrifying thing. Getting a hole drilled in your skull is not your average operation. So far, I have remained healthy and had a complete recovery. I sometimes wonder what my attitude would be if I had come out of surgery blind or had some severe complication arise due to the operation. Would I still see it as no big deal like I do now? Before the surgery, I made up my mind to be content whatever the outcome would be, but it's easy to stick to those words when all is back to normal. I am mindful that I could be administering myself hormone shots daily or I could have brain damage, but I don't have any of this. God tremendously used Dr. Kelly and graciously answered my prayers precisely how I hoped he would.

I have one thing impressed deep within my mind after all this...I live in a world where disease is certain and death is inevitable. These things affect me and they affect the ones I love - this is a reality of life. When I first picked up the book by Phillip Yancey, Where's God When It Hurts, and began to read it I wondered what hope is there in suffering? Where's God in all of this? All of us suffer in one way or another; we suffer from broken hearts and depression, the loss of a loved one, divorce, lifelong illnesses, cancer, and the list goes on. Each and every one of us is affected by death, disease and suffering...there's no denying our lives are full of it.

I believe there can be hope and happiness even in the midst of despair if you look for it. A quote from Yancey's book reads,

"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..."

Waking Up From Surgery

The first thing I recall while waking up from surgery was Dr. Kelly's wide, black-rimmed glasses looking at my face very close up. "Can you see me...Alecia, can you see? How are you doing...can you see?"

There was concern that I could lose my sight during the operation. The tumor had grown against my optic nerve, and so there was a chance (slim, but a possibility) that I would not have my sight when I awoke. I gave Dr. Kelly a thumbs up and nodded because that's about all I could do. My mind was working normally, but I was still so drugged up I couldn't communicate very well. I had a lot of questions. I tried to make sense of the sensations I had physically post-surgery. My lungs were heavy, my wrist hurt (where they put an arterial gas line), and the roof of my mouth was numb. Thoughts continued to race through my mind - I'm alive...I can see. Did I lose my pituitary? Am I okay? I continued observing the discussions of the doctors and nurses around me, hoping to hear answers to my questions.

As you can see from the picture, they removed my tumor through my nose. Dr. Kelly removed the bone from my sphenoid sinus, cutting through the skull base and the dura (brain lining). He does NOT pack the sinuses after surgery but only tapes thick gauze across the bottom of the nose. The only complication I had (if it could be called that) was a mild CSF (cerebral spinal fluid) leak during the operation. It was repaired with a titanium mesh and collagen sponges. You can click here: Endonasal Transsphenoidal Surgery to view the procedure.

The tumor was both gelatinous and fibrous in nature. As Dr. Kelly got closer to my pituitary, the tumor became more fibrous, making it challenging to spare the gland. He began slicing micro-layers of the tumor away until a normal pituitary gland was found via pathology exam. I didn't lose my gland; Dr. Kelly managed to save it! I barely took any pain medicine post-surgery. Some of the discomforts I experienced were a numb palate and a drippy/stuffy nose. I lost my sense of smell (completely) for a couple of weeks, but it eventually returned. I still have very mild numbness/tingling on the front part of my palate, but I am used to it now. To this day (15 months post-surgery) I have NO DAMAGE to my pituitary gland, and endocrine functions are normal.

It is too soon to know whether the entire tumor is gone and whether or not I will go into complete remission. As I mentioned in an earlier post, part of the tumor was deemed "inoperable" because it had grown into the cavernous sinus, which harbors the carotid artery. My neurosurgeon said any attempt to remove it would be catastrophic. It was possible, but not likely, that the tumor could fall out of that area while the rest was being removed. Thank God, the unlikely happened, and a majority, if not all, of the tumor, came out of the cavernous sinus. The MRI images I've had post-surgery show no apparent residual tumor. However, it is noted that a 2mm area is suspicious and may or may not be tumor. My blood work has remained normal, though (no excess growth hormone detected), so the doctors are assuming the suspicious area is scar tissue until proven otherwise.

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'll see you in the morning, Mommy..." my three-year-old daughter said as I prepared to leave for Los Angeles the day before my surgery. It was those words that inspired me to write this next entry. Saying Goodbye to my husband and the kids before the surgery was difficult. 

Although Dr. Kelly had only had one person out of 500 surgeries that had died due to pituitary surgery, there was a chance that something could go awry. I knew I needed to prepare for the worse. My husband and I decided to leave our kids with my in-laws while we went to stay overnight near the hospital. When it was time to leave, I sat with each of my kids individually and talked with them just in case it was the last time we saw each other. I wanted to assure them that "if God decided to take Mommy to heaven" or if I didn't come home right away, they needed to try to accept it. My older two kids understood as best as I think they could have, but when it came time to talk with my youngest daughter, she replied she'd "see me in the morning." Nothing I said could help her understand that in the morning I would not be here...and I wasn't sure when or if I'd be back.

Here is an excerpt from a letter I left for Dave in case he came back to Texas without me:

"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.