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.

Questions I Had

Here's a copy of the MANY questions I compiled for the neurosurgeon before I flew out for my second opinion at UCLA. I have posted some of the answers to the questions I had. Obviously not all were asked, especially the ones dealing with post operative (radiation) treatment. I figured I would save those questions for later if needed:

1. How many pituitary tumors have you removed surgically?

Answer: 500+

2. Have you had patients die from complications during the surgery and what about my situation makes that less or more likely?

Answer: Only 1 patient and he was an elderly man

3. If the tumor is removed from the pituitary will the left over tumor in the cavernous sinus continue to grow and cause the secretion of the trigger hormone that produces IGF-1?

Answer: Yes, if there is tumor left over - this is likely to happen.

4. Will the tumor in the cavernous sinus continue to grow if it has been separated from the pituitary? Assuming all tumor in the pituitary is removed and the pituitary is intact, could the remaining tumor in the cavernous sinus continue to cause hormone issues?

Answer: Yes, It's possible.

5. Can you use an endocscope to get the tumor from the cavernous sinus? How come you can't just grab it and pull it out of the cavernous sinus? Is it attached to the artery?

Answer: No, impossible. Results would be catastrophic. Death would likely occur if there was damage to the carotid artery. Too risky to surgically remove.

6. Will you use an intraoperative MRI or other imaging during surgery?

Answer: Ultrasound is used to determine the location of the carotid artery.

7. Will a pathologist examine biopsies during the operation to confirm whether adenoma has been found? How soon will we know if the tumor is benign or not?

Answer: Pathology will be done while I'm on the table to determine pituitary tissue from tumor.

8. Are stereotactic radiosurgery and gamma knife the same?
9. I read that Stereotatice radiosurgery has a higher complication rate than standard radiation and that they are equally effective - is this true?
10. I also read that radiation treatment of acromegalic tumors does not help reduce IGF-1 production. Is this the primary reason for using radiation to reduce what is left of the tumor in the cavernous sinus?
11. I've read that the lower dose fractionated treatment of Novalis is the same as gamma knife and that it is just as effective and less damaging to the pituitary, is this true and what method do you recommend in my case?
12. Is the radiation still needed even if the tumor has been successfully removed?
13. Will you transposition the pituitary away from the region that will be treated with radiation in order to reduce damage to what is left of the pituitary? If yes, how will the be performed? Ie: will autologous fat, fascia lata, and/ or bone graft be interposed between the normal pituitary and residual tumor in the cavernous sinus?
14. How long will I have to undergo radiation treatment, how many times? What are the risks? Who would you recommend for this procedure, anyone in TX by chance?
15. Do you expect eye movement and facial sensation to remain intact after surgery and post radiation? What us the possibility if carotid artery damage from the radiation?
16. I read on the UCLA web site that you are not using nasal packing in a research study, is this standard practice now?

Answer: Yes, standard procedure now. No nasal packing is used post operatively. Gauze is placed under the nose instead.

17. I understand you do not use fat to pack off a CSF leak, is this correct? What do you use and how much more or less effective is this than fat?

Answer: CSF leaks are repaired with collagen sponge and titanium mesh - depending on the severity of the leak.

18. How long do you anticipate I will be in surgery and what pre and post op tests will you do?

Answer: 3-4 Days if all goes well. Longer if post operative complications occur.

19. How are post op complications handled across state? Ie: If a CSF leak occurs a month after surgery, where do I go? Is it safe to fly to California if this occurs? Do you have a doctor in the Dallas area that you work with in the event of an emergency?

Answer: Dr. will work across state with other doctors as needed. Clearance is required to return home after surgery if CSF leak occurs.

20. Do complications increase with repeat surgeries if needed?
21. It appears I may have acromegaly. If this is true, would you recommend my being placed on Pegvisomant right after surgery or do I have to wait until all other means of treatment fail before going this route?
22. How do you know where the tumor started? Is this something you can determine from the MRI? Does the likelihood of cancer increase if a tumor has invaded the cavernous sinus (speaking to the character of the tumor)
23. Since the maxillary nerve is in the cavernous sinus - is it possible the ear discomfort (or pain in the area) is casued by the pressure of the tumor in the region and on the trigeminal (maxillary) nerve? It seems somewhat plausible, do you agree?
24. How do we know that the tumor did not originate in the cavernous sinus and not in the pituitary gland, especially since the pituitary gland's hormone production and vision is not disrupted with such a large tumor there?
25. Can you tell if the tumor has grown in size? (Is there a difference on the MRI's)
26. I have a history of high fibroginen and blood clots (post partum), is it possible to run a test to be sure there will be no bleeding problems during or after the surgery or is this part of the pre-op work-up?

Answer: Yes, the necessary steps will be taken to ensure clotting will not be an issue.

27. My neurosurgeon in Dallas described the tumor as being gelatinous and that it typically oozes out with some coaxing. Is this consistent with what you see on the x-rays. How can you tell if a tumor is fluid filled or not. With MRI or endoscopy can you determine what is good pituitary tissue from the tumor?

    Answer: No, not all tumors are gelatinous in nature. In fact, some are fibrous. **NOTE: My tumor was BOTH gelatinous and fibrous. The closer the doctor got to the pituitary the more fibrous the tumor became. Microlayers were removed until normal gland was confirmed via pathology report.

28. Will you have an endocrinologist assign a prophylactic medication of cortisol in the event of an adrenal crisis. My endocrinologist in Texas says this is necessary, do you agree?

    Answer: Prophylactic cortisol is not given. Only prescribed if post-op labs indicate it's needed. Would discuss this with the endocrinologist in Texas.

29. How do I keep communication flowing easily between doctors?
30. Do you have an ENT that opens the spenoid sinus or do you do the surgery yourself? In Texas I would have a team of three doctors working on me, how is UCLA different?

    Answer: Dr. Kelly does not use a team of doctors but does it all himself. He has a team of doctors that oversee my post operative care but he is the primary physician in charge.

Getting a Second Opinion

My neurosurgeon in Dallas had only removed maybe 50 pituitary tumors, and he was not confident about my prognosis. He was sure I would have a damaged pituitary post-surgery if it didn't detach while the tumor was removed. Hormone replacement would most likely be the result. This news was upsetting. I was told part of the tumor was deemed "inoperable." It had invaded the cavernous sinus and was near or against the carotid artery; any attempt to remove that would be catastrophic.

Dave and I decided to get a second opinion. We searched online and found several different possibilities. Ultimately the doctor we met with was Daniel Kelly, M.D. at **UCLA Medical Center. We were referred to Dr. Kelly through another neurosurgeon at UCLA who did not specialize in pituitary tumors. Dave and I flew to California to meet with him and were greatly encouraged by his expertise. He had **performed 500+ surgeries. His statistics were just what we needed to see. After all, everything we had read mentioned the outcome of the surgery ultimately weighed on the skill and experience of the surgeon who removed the tumor.

Dr. Kelly became the silver lining among the clouds and gave us some hope. Although his opinion was the same regarding the part of the tumor near my carotid artery, he had a more confident outlook regarding my prognosis. After much prayer and consideration, we decided I would have the tumor removed in Los Angeles.

** Note: Dr. Kelly has since moved to St. John's Medical Center. The technique he uses is the Endonasal Transsphenoidal Surgery.

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

Andre the Giant and Richard Kiel, AKA -"Jaws" (the villain with the big silver teeth) in 007 movies, are two people that stick out the most in my head when I recall people that have acromegaly. So I searched the Net for more information or pictures of nonfamous people who had the disease - hoping to find images of women with acromegaly. But there was not much I could find in the way of photos. Just mounds and mounds of repeat information defining acromegaly and how to treat it. Surely there's got to be someone else keeping a journal about this!

I kept asking myself, "What will I look like?"

I continued to search...

Everything I read confirmed the physical changes I was experiencing. I had symptoms relating to both prolactinoma and acromegaly. A few examples included my facial skin began to thicken, and pimples were occurring more frequently than usual (once in a while). I also continued to lactate after my youngest daughter was weaned for two years; I began to sweat a lot and had horrible headaches. The headaches were in a category of their own. I cannot describe them to you, but the pressure was unbearable (skull splitting), and it was hard to tell where they originated. The headaches were instantaneous and usually without warning; they had no pattern - although, in the beginning, they did seem to happen more at night. As time passed, they became more frequent (lasting longer) and occurred at any time of the day. Usually, when I felt a headache coming on, I was in intense pain within minutes.

I began having severe headaches shortly after we moved from California to Texas in 1999. I had no history of headaches, so my general physician ordered a CT scan. It came back "normal." At this point, my doctor assumed, and so did we, that the headaches were allergy related because this all started after our move (the area is awful for allergies). After that, I never vigorously pursued another answer for the headaches, although I mentioned it whenever I went to the doctor. I frequently took naproxen sodium whenever I had a headache, which helped, and then I drifted off to sleep.

In addition to my other symptoms, I developed chronic (left) ear pain. For almost two years, I visited several doctors, including two ENTs and a TMJ physician, to find the cause. The TMJ physician said I didn't have TMJ (took x-rays, etc. to rule it out), but the ENT (who referred me to the TMJ doc) insisted I had the problem. I asked if he could order an x-ray or something to look deeper into my ear, but he felt there was no justification because I had a "classic case" of TMJ. He didn't think it was necessary to look any further until I returned to the TMJ doctor for more testing. Finally, I got another opinion from a third ENT, who ordered an MRI and found the tumor. When this ENT broke the news, he said that my inner ear "looked great" but that I had a giant tumor in the middle of my head. He referred me to a neurosurgeon for further treatment.

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...