Tuesday, January 08, 2008
Planning Ahead
Neuro-Endocrine Tumor Center at Saint John's Medical: "NETC's new comprehensive website is filled with outstanding current and accurate information. The website is designed for the patient. Dr. Kelly spent many hours writing medical content and meeting with the web-technicians to ensure that patients can use the site for education as well as a tool to help themselves and others...take time to watch a couple videos of our past support group meetings with friends and family!" - Sharmyn McGraw, Neuro-Endocrine Tumor Center's Pituitary Support Group Facilitator.
*Please note: NETC is now known as Pacific Neuroscience Institute.
Meet Sharmyn Mc Graw: A patient of Dr. Kelly's and former Cushing's sufferer. She has been in remission from the disease for several years. She is head of the Neuro-Endocrine Tumor Center's Pituitary Support Group in Southern California.
I would encourage you to take the time to sift through both sites. Treatment for pituitary tumors can be a life-altering experience; therefore, if you are thinking about having surgery or have been told it is necessary, it is important to be as educated as you can and plan. Dr. Kelly has put together an informative video where he addresses many questions people have when preparing for surgery. You can click here to watch the video or follow the link on the right side of my blog.
**Warning: the video does show a graphic video of the surgery being performed.
Tuesday, August 14, 2007
Two Years Later

This Sunday will be the anniversary of my brain tumor being removed two years ago. Two Years! My future seemed so foggy when I was first diagnosed with the tumor. I couldn't see things getting any better but only worse. I wondered if I'd even see my kids get older and how I would get through homeschooling and raising three kids after surgery for a brain tumor. I stood a chance of permanently damaging my pituitary or, worse, losing my pituitary altogether. Either way, I was expecting a lifetime of hormone replacement. Of course, the thought of drilling my head was so scary. Although I knew the tumor was not cancerous, this was going to be (still is) an ongoing life struggle. There was so much uncertainty.
I settled for just having a local neurosurgeon in Dallas take my tumor out, but no - my husband would not have it. He felt we needed to find the best surgeon, even if we had to pay cash to find him. David searched endlessly on the Net, looking for answers and clues about where to go. He took the reins in the whole thing, and I am so grateful for that. I had given up any hope of this having a good outcome. The thought of having a good prognosis with a brain tumor was just not in my mind, but David never gave up hope.
Before I had my tumor removed, Dave and I searched for information about acromegaly, hoping to read a personal experience from someone who had gone through this type of surgery. I found a lot of message boards and dry medical articles, but nothing too helpful or inspiring. I decided back then that when all was said and done, I would erect a blog and speak to my experience (provided I SURVIVED the operation - ha ha!!) because it was scary facing this alone. I have come thru this surgery with normal recovery so far. Radiation was not needed after all...although it may be in the future should the tumor rear its nasty head again. My pituitary is functioning perfectly to this day, and the most fantastic news of all - I am pregnant again! If someone had fast-forwarded my life from before the surgery to the present day, I'm not sure I would have believed it. My husband had a vasectomy six years ago, so another baby wasn't in our future, or so I assumed.
I am thankful to God for the outcome I have had with this surgery. Dr. Kelly did an excellent job in preserving my pituitary function when he removed the tumor, and he has continued to provide me with great care post-surgery. He has recently moved from UCLA to Saint John's Health and is now head of the neuro-endo department. So if any further treatment is needed, I will follow up with him there. David, my family, and friends have also been a tremendous support through this whole thing and I am so blessed to have them in my life.
I will end this blog with a repost of a journal entry I wrote shortly after I found out about my tumor.
Not only did I come out of this ordeal with good results so far, now I am facing a direction in life I never thought I'd see again - labor and delivery!- 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...
Friday, June 22, 2007
Second Surgery Update - Unexpected Delay
*For information regarding my current health situation click here.
Wednesday, May 30, 2007
IGF-1 Climbing?
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!
Sunday, May 06, 2007
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.
Thursday, April 26, 2007
Update: Surgery is Needed
IMPRESSION: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.
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.
Sunday, February 18, 2007
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...
Wednesday, January 10, 2007
Before & After Photos
Friday, November 03, 2006
Dealing With Emotions
Photo taken August 2005: Less than a week after the surgery - my husband tells to "smile" as he takes a picture.- 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.
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..."

