Webinar: Understanding Proton Therapy

MD Anderson's Proton Therapy Center is featured in this webinar hosted by the American Brain Tumor Association. It is about 45 minutes in length and very informative.

Q & A begins at aprox 28:00

If you are considering radiation treatment for a pituitary tumor, this video on may be helpful in learning more about this type of radiation and how it works.

Read about my personal experience with Proton Beam Radiation: Click here

Blessings

I heard this song for the first time just before my second brain surgery in 2011. The words brought me to tears, and it's still one of my favorite songs. However, I didn't know that the singer's husband had surgery for a brain tumor in 2006. I hope her words bring you as much comfort as they did me. May your blessings be found in unexpected places. Listen:

Laura Story - Blessings

Sharing My Experience: 28 Days of Proton Beam Radiation

As many of you know, I completed 28 days of radiation treatment at MD Anderson's Proton Beam Center on October 17, 2012. My husband, four children, and I stayed in temporary housing near the Houston hospital for seven weeks while I went through radiotherapy. I'm three months post-treatment this month and doing well.

Before I get into the details of my experience, I want to thank Tyson Koerper for sharing his story about radiotherapy in the Acromegaly Community book, Alone in My Universe, by Wayne Brown. Although the type of radiation I had was different, his account was very insightful when preparing for my radiation treatment. I could identify with many things he wrote about, and it helped.

Preparation for proton radiotherapy included looking for temporary housing, blood work, cognitive testing, hearing and eye exams, and a radiation simulation appointment at MD Anderson's main building and the Proton Beam Center. I also prepared for treatment by cutting my long hair into a bob and picking out, but not purchasing, a wig just in case I needed it. The amount of hair loss during radiation treatment varies from person to person. Getting a haircut was not a requirement, but I felt it would help me better prepare.

Two weeks before my first treatment, I underwent radiation simulation, which was easy and painless. A frameless mask and bite block were made during my simulation appointment. This process includes creating a mold of my head using a warmed-up flat piece of meshy plastic. It was placed over my head with the bite block in my mouth. Once the plastic hardened and determined to be an accurate fit, I was bolted to the table using the frameless mask. This was used in conjunction with CT scan to begin the process of mapping out my treatment plan



The transition from Dallas to Houston was easy. My family and I settled into the area a few days before my first treatment. We were able to rent a beautiful, fully furnished, three-bedroom apartment situated in a gated community and located a few blocks away from the Proton Center. The temporary housing service we used, Temp Stay, was beneficial and accommodating. MD Anderson also has a housing resource list on their website, which includes other organizations offering help to patients and their families needing a place to stay while having treatment. In addition, my husband's employer arranged for him to work from Houston while I had my treatment. I am so grateful for their understanding, flexibility, and concern. I home-schooled my kids so we could carry on a school routine amid our circumstances. I was also able to continue driving during treatment

Dropping Dave off on his first day at work in Houston

In the days preceding treatment I was extremely nervous. Here's some thoughts I wrote down once we settled into the apartment and reality was settling in:

We moved into an apartment this week in preparation for 6 weeks of radiation which is set to begin this Monday. I have mixed feelings about the whole thing. Wondering if I'm doing the right thing - if undergoing radiation will stop the tumor. Is the sacrifice of losing my pituitary gland worth it, or will I continue to have tumor growth and a damaged pituitary gland? It's surreal to think that I'm in that last-ditch effort to stop the tumor, and I'm feeling weary at the prospect of losing hormone function. 

I was not surprised when it was confirmed that the tumor had grown back last year. In the back of my mind, I feared it had. Not that I doubted the power of God to heal, but I knew the chances of staying in remission were slim, so I prepared myself accordingly. I never absolutely stepped into victory mode - claiming to be healed because God's plans for my life were still unfolding, and I didn't know what was around the corner.

After my first surgery in 2005, I was cautiously optimistic but kept reality in check. I'm sure I did this for my own mental protection, so I wouldn't blame God when/if it returned. As much as I don't want to live with pituitary disease, I accept it and live with the understanding that there will likely be physical changes. Knowing God is faithful and always wants what is best for me...I understand and accept that healing may not necessarily come. God's power in my life has been manifested in many ways - and not always in the form of physical healing, but through spiritual healing. To me, this is the most important, and if my soul needs to be transformed and prepared to meet God, then only he knows what I need to get there. This has helped me get to where I am today. It is my prayer that I will remember this. 

Here are some more thoughts I jotted down on my first day of treatment. I've pretty much left the wording intact. I'm glad I wrote it down because I don't think I could describe the experience as accurately now:

So I had my first treatment today. Overall it was essentially painless and better than I expected. But, of course, this is day one, and I have 27 more days to go. The radiation techs were friendly, letting Dave stay in the room while my head was bolted down on the table using a form-fitted plastic mask. He took some pictures, which were interesting to see after I left the radiation center. It gave me perspective on how it is to be on the outside looking in.  

Proton Beam Gantry 

Treatment - Day One

Plates used during my radiation treatment to control Proton Beams

Since it was my first day in the machine, it took a little longer than usual. The techs wanted to be sure everything lined up as it should. They offered music to keep me company and said I can make my own music list, and they would play it while I was having treatment. Nice! Once the machine began shooting radiation into my brain, I became extremely nervous, and my heart was racing. I wanted to cry and sensed I was on the verge of an anxiety attack. Knowing I could not move, I just prayed for peace and tried to distract myself with good thoughts. Thankfully I was able to stay calm and did not go into a full-blown panic attack - that would have been bad.

As described in the Acro book, I could smell the radiation as it was penetrating and wafted about my head. Weird. It was subtle, but I could tell when it happened. It is similar to the feeling I get when I have a CT scan, so I wasn't caught off guard too much. There are three areas where the beams penetrate my head: the left temporal, right temporal, and top of my head. All I could think of at that moment was that I hoped most of the radiation was landing on the tumor, not my pituitary gland, optic nerves, or carotid arteries. I liken the experience to having knives thrown at your head while laying against an outline of your body on a backdrop. It takes a lot of courage to lay down and be bolted to the radiation machine. Especially since I don't know the people in charge. Yet, I let them shoot away at my brain...I must be crazy! 

Moments before my first radiation treatment started

As soon as I got up from the table, I noticed my neck hurt badly - I assume it was from being locked down. I was super tense and squeezed my hands numb, so I don't think (hope not, anyhow) my neck will hurt like that every time - we'll see. It's been almost five hours since my treatment, and I feel better and completely normal. My eyes feel a little dry and itchy, so I use lubricant eye drops to help. I was having hot flashes while making dinner, but I've had these episodes since my last brain surgery, so I'm not sure it's related. I nauseous before I went to sleep, but not bad. I'm paying close attention to every little thing right now, so I'm trying to not go overboard. 

The kids are nervous. I can see it in their faces. [My son] is curious about the science behind what I'm going through, but at the same time I think it's because he's trying to figure out a way to help. He keeps looking at me worriedly; I just assure him I'll be okay. I think it will be harder to reassure if my hair starts falling out. I think today was harder on Dave than myself. Neither of us knows what to say to each other, and it's awkward. Dave commented how upsetting it is seeing elderly couples at the Proton Center. He feels like our time together is being cut short and we're forced to face the possibility of separation by death too early in our marriage. We're supposed to grow old together, and it doesn't seem fair. I get what he's feeling; I was thinking the same thing, too. We just don't know how much time we have together...makes me cherish the time we have had all the more. I hope this is the beginning of healing and successful recovery - not the other way around.

On the second day of treatment, things were already getting easier. Here are some notes I jotted down on the second day's treatment:

Wow. The second day of treatment was so much easier than the first. When I returned to the room, I already felt entrenched in a routine and not as nervous as I was the day before. I brought my own stash of music to listen to while on the table. What a difference music makes when I'm going through treatment! Before leaving for the hospital, I prepared a music list of rock, contemporary Christian, and country music, which are my favorite songs. I loved listening to music while on the table- it helped quickly pass the time. Also, the tech put a spearmint scent on the mask so I wouldn't smell the metallic scent that lingers once I've left the clinic. That helped too, but I could still smell it. Overall it was a better day; I had no pain in the neck or numb hands, and my time on the table was short. I'm tired but still feeling alright and have my hair. I'm nervous about losing my hair because reality will set in when I look in the mirror. I think I'll still be alright, but how will I feel attractive with a bald patch on my head? Dave tells me I need to order the wig I picked out before we came to Houston, but I'm waiting because it doesn't sound like I'll lose a lot of hair. I can probably hide the bald patches with a scarf or hat. I took some "before" hair loss pictures to note my progress.

The past couple of days, we've occupied our time with puzzles and mastered the art of using the weaving loom. So far, we've weaved 53 squares or pot holders, which [my daughter] wants to use to make a blanket. Dave's off work right now, but he's returning on Monday. So I'm going to try to get back into a routine with school for the kids. I 've decided to count weeks instead of days, hoping the time will go faster this way!  

Looking for missing pieces of the puzzle at MD Anderson Cancer Center

It was rainy during the first week in Houston, which intensified my feeling of being in the midst of a stormy trial. One day, the sky looked very ominous, and I grabbed my cell phone to take a photo. To my surprise, lightning flashed at the same time I snapped the picture, and this is what I captured.

Photo taken by Alecia E. - Houston, Texas 

I've always wanted to take a photo like this. I grew up in the desert area of Southern California, so the days it rained were very special to me. I used to pray for thunderstorms, which always gave me a sense of God's presence.The moment's timing put me in awe, and the picture was a great comfort. To me, it symbolized that God was with me in this storm. As the days continued to pass, my anxiety eased up, and going to the hospital became very routine and, most importantly, uneventful. Most of the time, I went to my treatments late in the evening after my husband returned home from work, and he went with me to every appointment. The treatments lasted about 15-20 minutes, depending on the patient load.

Here's a couple pictures and updates from my CaringBrige.org journal I posted for friends and family summarizing my experience:

Written Sep 20, 2012 9:31am, CDT

 "Today, I am on day 9 of 28 treatments and am tolerating it well. Fatigue increased yesterday. I feel the changes, but I'm not down all day or hindered from doing regular activities. To put it in perspective, I can drive myself to the treatments if needed. The radiation is not debilitating. I still have my hair but have been warned it may fall out in the areas where I am being treated. My head is itchy, so I cannot tell where that might be. There's not much else to say at the moment. I meet with the oncologist weekly to review symptoms and discuss the plan..."

Written Oct 10, 2012 8:28am, CDT

Today is day 23 of 28 treatments - only one week before we head back home. Thankfully the side effects have been tolerable, and for anyone praying my hair wouldn't fall out, it hasn't...yet. I bought some cute hats and have a wig picked out in the event I need it, but I look the same as I did on day one of treatment. Ironically, my hair has grown like crazy instead of falling out. I will need a haircut when I get back. I say this cautiously, though, because my doctor thinks I may lose some. Keeping my hair has helped when looking in the mirror, but I won't fall apart if it happens. I'm prepared either way.

Thank you for your prayers and thoughts of encouragement. This has been a peaceful time for me. The fears and anxieties I carried into the Proton Therapy Clinic have been alleviated. I am grateful for your compassion and cherish the comments left in my guestbook. I'm thankful to God for the wonderful people I met during my treatment and the awesome MD Anderson Cancer Center staff. It is an amazing place, and what a great time to live in a day where technology is so advanced. I don't know if I will have complete physical healing due to this, and there is a lot of uncertainty about the future, but I believe that God is in control. He has given me the assurance of his word. He will work all things for the good. I am content with my situation and grateful for you all!

David or I will update again if anything changes, but I am currently stable. I turn 40 years old tomorrow. Guess you can say I'm not "WIGgin' out" about it. Ha! Okay, bad joke. This will be a memorable birthday for sure! 

Celebrating my 40th birthday at the Proton Center

Wiggin out with my kids

The Proton Center put up a birthday banner for me on my birthday, which made the time special, and I did WIG out on my birthday after all. Little did I know my husband and kids were planning to surprise me by decorating the apartment, baking a cake, and singing happy birthday while dressed in silly wigs. I received a gray wig for my 40th birthday. My husband said he was praying my hair wouldn't fall out, especially on my birthday, because then it would be the only thing I had.

Written Oct 25, 2012 10:42pm, CDT 

 I completed my final treatment a week ago, and we got back home last Thursday evening. It took a couple days to unpack, but we're back to a normal routine (whatever that is - ha!). I am doing well but still feel very tired and not entirely normal. This is to be expected for the next few weeks. The fatigue comes and goes in waves, but nighttime is a little more difficult. I will not know if the radiation was successful for quite some time. The goal is just to stop the tumor from growing, but I will most likely have pituitary failure due to the treatment. I'll be monitored closely for any hormone changes in the future. I return to MD Anderson early December for a follow-up MRI and will update with any news I have about the results. 

Family picture after banging the gong on the last day of treatment

I never experienced hair loss or significant side effects from radiation. I had one or two days of nausea and severe headache, but it improved without the doctor's intervention. Moderate fatigue or energy loss was the most prominent complaint, but it was tolerable. The fatigue continued about 6-8 weeks post-treatment, but it's hard to say when exactly because I was diagnosed with Type-A flu a month after treatment. My immune system was strong enough to handle it because no complications arose, and today I feel fine. The flu was worse than six weeks of radiation! I have fully recovered as expected.

My follow-up in December was good. My pituitary function is still intact, no excess hormones are detected, and the residual tumor is stable. However, because my tumor is not fast-growing, it will take a couple of years to determine the radiation treatment's success.  I'm due to follow up with an endocrinologist in Dallas at the end of this month and return to MD Anderson in May.

**For those of you that have an active case of acromegaly please note that I am an anomaly in the world of acromegalics. I have been in remission since my first surgery in 2005 and had a very mild case of acromegaly because my tumor is partially functioning. If I have an occasional burst of excess hormone, it's not usually detected in my blood work. My growth hormone levels have remained normal, and I've never needed medication to control the disease. Most acromegalics tell a different story and are treated with medication and/or surgery before they proceed to radiation treatment. Not everyone's situation is the same. My current battle is primarily with tumor growth as it continues to invade my skull base.

What's Next: Proton Beam Radiation

Ever since the discovery of the tumor, I've known radiation was on the horizon, but I held onto the hope that I'd never have to do it. It was unsettling to think I would ever need radiation because I associate radiation treatment with cancer - most people do. My residual tumor is benign but not operable, so I have two options: wait and observe or proceed to radiation. Waiting is a gamble and most likely not a wise choice because of the aggressive behavior of my tumor. Although it is not cancerous, the threat of damage to critical structures of my brain is real.

I met with a neurosurgeon at MD Anderson Cancer Center for another opinion regarding the location of residual tumor in my skull base and radiation options. The doctor agrees with the oncologist and my neurosurgeon in California regarding the distance of tumor to critical structures. He did not recommend Gamma Knife or 5 day radiosurgery and said that 6 weeks of radiotherapy was the safest plan. I asked about Proton Beam Radiotherapy vs. Fractionated Stereotactic Radiotherapy, and he thought I was a good candidate for Proton. Shortly after the consult, I decided to move forward with radiation treatment in Houston. They wasted no time in petitioning my insurance company for coverage. My insurance initially denied the request but then overturned it when my oncologist called and gave more detail regarding my case. I am relieved and grateful for the oncologist's efforts because I didn't want to go through a drawn-out appellate process.

I will proceed with radiation once a treatment plan is complete and agreed upon by all the doctors. After treatment, I will be monitored closely for hormone failure since my pituitary gland is in the field of radiation. I've been told that I will experience some hair loss and fatigue, but other than this, life goes on as usual. I'll document my experience along the way, but updates on my health blog will be delayed. It is hard to know on this side of radiation if things will go smoothly, but I'm content with my decision and anticipate a good outcome for the most part.

Who Nose an Acromegalic?

Most doctors I've seen do not think I have the clinical appearance of an acromegalic. The neurosurgeon I met with after the discovery of my pituitary tumor believed the mass was either a prolactinoma or nonhormone-secreting macroadenoma. His description of an acromegalic's appearance was exaggerated and not wholly accurate. He had no idea a patient with this disease was sitting in front of him. The next doctor I saw, an endocrinologist, ordered blood work as a matter of procedure - not because he believed I had acromegaly. He was surprised when my lab results returned positive and said I was the second acromegalic he'd met in his entire career.

One of the many changes seen in a person with acromegaly is an enlargement of the nose. I thought this was evident in my case, and my endocrinologist at MD Anderson agreed. A couple of years ago he sent me a copy of a letter addressed to my neurosurgeon. In it, he mentions, "The patient did supply me with some pictures between 1994 and the time of her surgery, there is perhaps more prominence of her nose, which can be seen on serial images..."

As you can see from the photos above, the tip of my nose did change shape. It was such a subtle change over time that I did not take notice of this until I was diagnosed with acromegaly in 2005. Fortunately, that's all that is noticeably different. My IGF-1 hormone levels were barely elevated (as documented in my lab work), and because of this my appearance is mildly altered. Most patients with acromegaly have an enormous amount of growth hormone circulating in their system, and the effects are devastating if it is not controlled.

Here are some of the physical signs and symptoms of acromegaly:

Enlarged hands and feet
* Larger and broader facial features
Enlarged liver, heart, kidneys, spleen and other organs
Increased chest size (barrel chest)
Jaw protrusion
* Thickened, oily skin
* Excessive sweating
Skin Tags
Fatigue and muscle weakness
A deepened, husky voice
Severe snoring or sleep apnea
Impaired vision
* Headaches
Enlarged tongue
Back pain
Pain and limited mobility in joints
* Menstrual cycle irregularities in women

* Symptoms I noticed when diagnosed in 2005.

An important step in early intervention is not just looking for the disease outwardly, but having blood work done to rule it out. If doctors excuse the possibility of acromegaly based on the appearance of a patient - it can easily be missed and diagnosis is delayed. This is a common problem, especially among younger acromegalics. If acromegaly is not found early enough, a person's appearance will change and their health can be compromised as a result of excess hormone excretion. Many patients who manifest the clinical appearance of acromegaly talk about how they told their doctors for years the physical changes they experienced, but their complaints were either dismissed or ignored. I suspect this is probably due to a lack of exposure to patients living with this rare disease.

Radiation: The Good, the Bad, and the Unknown

October was dominated by travel and doctor visits to discuss follow-up plans regarding the residual tumor. Much of what was discussed is good news, tempered with bad news and overshadowed by an unknown prognosis.

I met with my ENT and neurosurgeon in California mid-October for my three-month post-op appointment. My CT scan and sinus scope revealed no infection. I watched on a nearby monitor as the ENT put a camera up my sinuses. I could see firsthand where he and Dr. Kelly performed the surgery (modern technology is so cool). I appreciated the doctor's willingness to include me in this procedure, and I am grateful for the opportunity to look into this area. I was amazed at how clean everything looked. He explained the sinuses' anatomy and pointed to all the areas that were affected as a result of the operation. There is still an area on the bottom sphenoid that is healing and that was a bit gnarly, but overall my doctor said the sinuses look very good. I was instructed to continue my antibiotic ointment for another month and the sinus rinses indefinitely.

I also had an MRI while in town, and the results were discussed with my neurosurgeon. Both tumors are stable, which is good news, but radiation treatment is still recommended to begin in 6-12 months because the tumor is expected to grow again. Dr. Kelly will consult with Saint John Health's oncologist to determine what he believes would be the best treatment plan. Unfortunately, there is nothing else to update about this visit because I am still waiting for more information.

My other follow-up appointments were with MD Anderson's oncologist and my endocrinologist, and both were very informative.  The words that resonated with me the most from my discussion with the oncologist were, "This is a tumor you don't want to mess around with..." meaning this is serious, and I should take the necessary steps to stop its regrowth before it invades critical structures. I've read various publications about radiation treatment and its effect on the pituitary gland. The appointment with the oncologist was insightful as to why I might consider one type of radiation over another. The options for treating my residual tumor are proton beam therapy, stereotactic radiosurgery, stereotactic radiotherapy or somatostatin analog.

Here's what I discussed with both doctors:

Somatostatin Analog: This is not an option available to me because my tumor is a partially functioning tumor. My growth hormone levels are normal and so there is no excess hormone to control. Tumor growth is the only current concern. The cells in my tumor are different than a typical acromegalic tumor and it would most likely not respond to medicine.

Stereotactic Radiation Therapy: This is six weeks of daily radiation and a common treatment plan for pituitary tumors when the tumor is near the optic nerve. My tumor is a safe distance away from the nerve, so it is not the best treatment option. However, should the tumor grow in the next six months, I'll need to consider this.

Gamma Knife Radiation: This is the type of radiation that MD Anderson is recommending. It uses a higher dosage of radiation than the other options, which is why it would not be used if the tumor were close to my optic nerve. The procedure takes one day and involves three doctors: an oncologist, a neurosurgeon, and a physicist.

Here's a video that explains what to expect with Gamma Knife radiation:



Unfortunately, my pituitary is in the target field of radiation because the residual tumor is on either side of the gland. This means I will most certainly lose function as a result of treatment. Even though there are risks with the gamma knife (stroke, secondary tumors, and damage to critical structures in the vicinity), the doctors feel this is the safest and most effective way to stop the growth of my tumor. Hormone replacement will be needed.

Proton Beam Therapy: Another option that is available but not recommended by the oncologist. This is also a six-week treatment plan, and it's not as effective as the Gamma Knife. There's no benefit in choosing this over stereotactic radiotherapy because the result is likely the same.

I am undecided about where I will ultimately have radiation and what plan I will use. If I have my treatment in Houston, I will have to consult with a neurosurgeon, and I don't have one at MD Anderson. I prefer to stay with my current neurosurgeon since he is most familiar with my case. I am upset about the prospect of losing my pituitary function and the complications that could come about as a result of radiation. It is a difficult decision - a catch-22 in so many ways. If I don't have radiation, the tumors will continue to grow. Pituitary adenomas are typically slow growing and not aggressive, but mine has already expanded into the cavernous sinuses and is abutting both arteries. Adjacent to each tumor is the right and left temporal lobes. Also, the doctor discovered I had dural invasion during my most recent surgery.  The left-sided tumor is a safe distance from the optic nerve at the moment, but if left alone, it could grow against it and cause blindness. The behavior of the tumor is unpredictable.

I am struggling with accepting the need for radiation and have difficulty convincing myself this treatment is needed. I have no health problems. If the tumor stabilized, I could live with it, but apparently, the risk of regrowth is too significant. I will be revisiting this and possibly begin treatment in the spring.

Endocrine Follow-Up Three Weeks After Surgery

I met with my endocrinologist at M.D. Anderson this week, and I am still waiting for a couple more lab results to come in, but it appears my pituitary gland has survived the second surgery. This is great news! The doctor and I discussed many things, including the tumor pathology results and future treatment options.

As I mentioned in previous postings, I have a partially functioning tumor. A partially functioning tumor randomly excretes excess hormone (GH and prolactin). This makes it unpredictable in terms of growth and undetectable in blood work because hormone levels can be normal even though tumor is growing. This is precisely what has been happening in the past year. In August 2010, the tumor in the left cavernous sinus measured 8mm x 3mm. In March 2011, it measured 11mm (1.1cm) x 6mm, and my pre-operative MRI in July showed the tumor was 15mm (1.5cm) x 8mm. It was confirmed during surgery that the suspicious area in the right cavernous sinus is a tumor that invaded the dura mater. Even with tumor enlargement and regrowth, my hormone levels consistently remained in normal ranges with only slight increases over time. The tumors were extremely fibrous and not easily removed. What remains in the cavernous sinus (about 40% residual) is inoperable and will likely need radiation. It is unknown if medication can be used to stop the growth because it is not a typical functioning tumor. My endocrinologist is taking my case to a pituitary conference next week to discuss the management of my tumor growth with his colleagues. Among the options being considered is proton beam therapy, stereotactic radiosurgery, stereotactic radiotherapy, or somatostatin analog.

My pathology results returned positive for growth hormone and prolactin but also gave a percentage of something I didn't know about - P53 and Ki-67. It sounds as if I'm introducing a set of robotic twins. These are tumor markers used to define the behavior of a pituitary adenoma. I'd never heard of these tests before last month, or maybe I stumbled upon them in a medical article but didn't take note of it at the time. So what's the signifigance of P53 and Ki-67? The endocrinologist says my results (P53 = 1% and Ki-67 = 5%) indicate the tumor could become an atypical pituitary adenoma. According to the World Health Organization Classification of Endocrine Tumors, a positive P53 with Ki-67 over 3% suggests an aggressive invasive pituitary adenoma and they recommend careful monitoring for regrowth with MRIs. I asked the doctor if these numbers meant I would wind up with pituitary cancer, and he answered that it's not impossible but highly improbable. The diagnosis of pituitary carcinoma is rare and not typically diagnosed unless the tumor appears up in another region of the brain or body (again - unlikely in my case). This is good to know!

I also met with an Infectious Disease doctor while at M.D. Anderson. I'm still on oral medications for the bacterial and fungal infection festering in the sphenoid bone. The doctor feels it's safe to stay on oral meds because all of the mesh was removed, and most, if not all, of the osteitic bone was drilled out. So, I have been spared having to go on I.V. antibiotics. The final pathology report showed several different bacteria that grew on the cultures. Results of the fungus are still pending, but initial impressions under the microscope suggest it belongs to the Aspergillus species.

I'm so glad I went through the surgery - no doubt, it was absolutely needed. I would've been in a far worse situation had I not gone through the operation. This was the best course of treatment. My energy level is not quite back to normal yet, but I am feeling much better. I'm satisfied with the surgical outcome and am grateful for the doctors involved in my case. It was not easy to go back to California and have another surgery, especially after being told by three doctors in Dallas that my life may end in the operating room. It was a risky operation but successful in the right surgeon's hands.

Two words come to mind that describes my attitude right now: vigilant and trusting. If I could impart anything to my readers about this experience, I would say: don't let treatment decisions be driven by fear. Understand your illness and all treatment options; employ the best doctors to help; take time to plan carefully for optimal outcomes, and trust that your choices are the right ones. All of this makes a difference long-term. 

Two Weeks Post-Op

Photo: My step-sister & I - morning after surgery.

I met with my neurosurgeon last Friday and received clearance to go home. My family and I returned to Texas late Sunday evening after driving two days from Southern California. We managed to dodge a potential accident caused by a blown tire that flew off the back of a truck going 80 mph right in front of us. Other than this, the trip back home was fairly uneventful. I have a lot to write about, but much of it will have to wait until I can organize my thoughts. My experience at Saint John's was wonderful and I'm so grateful for the doctors and nurses that cared for me there. Much of the infected bone was taken out and the surgeons were able to remove the entire body of mesh. I am alive to tell you that - this alone is amazing! I'm glad I went in for the surgery, but still have a long road ahead of me.

Here are some excerpts from my CaringBridge.org site which I put together for family and friends during my stay at the hospital. This will bring you up to date on my progress. At the moment I am still waiting to hear from M.D. Anderson Cancer Center for a post-op endocrine and ID appointment.

Wednesday, July 20, 2011 8:44 PM, CDT

Post Surgery Update
Thank you to everyone for their prayers and phone calls. I was hoping to post something myself last night but time got away from me. Alecia was in surgery for 4.5 hours and I was able to visit her in the recovery room at 8:00 PM PST. The results are mixed. A lot of porous bone was removed from the sinus and the mesh was completely removed. She's been dealing with stabbing pain behind the left eye for about 6 years and, thank the Lord, that is gone now. She has a slight fever and is on antibiotics. There was no cerebral spinal fluid leak this time and Alecia says she’s feeling better after this surgery than she did her previous surgery. They may release her from the hospital tomorrow. Tumor is on both carotid arteries and some was removed but much of it is too fibrous. I was able to avoid telling her she would need radiation last night but her questioning was more direct today and I had to let her know radiation was being recommended to treat the remaining tumor.

- David


Friday, July 22, 2011 9:37 AM, CDT
written by Alecia E.

Released from Hospital
I was released from the hospital yesterday afternoon and am home resting at my parents house now. The level of pain I'm experiencing is minimal and better than I expected. For the most part, I am very tired and feel like I am battling a bad head cold. Last night was probably the most uncomfortable night so far as my headache intensified after dreaming about hiking in the Grand Canyon all night. Not good to dream about hiking in the Grand Canyon after brain surgery - ha! I go back to Saint John's Health for labs tomorrow morning for a quick sodium recheck. I developed hyponatremia shortly after the surgery, but it was under control yesterday. Just staying on the safe side. Still waiting for pathology reports to come in, but the doctor was pretty certain the tumor had not become cancerous. Also, still waiting to see if anything grows out on the infected bone that was taken out.


Sunday, July 24, 2011 1:20 PM, CDT
written by Alecia E.

Bone Infection Results
I was called back to Santa Monica this past Friday for a post-op appointment with one of the surgeons. Some of the pathology reports are trickling in, and although not completely grown out yet, it appears I have three types of abnormal bacteria growing and a fungal infection in the bone under my brain. Final results are still pending, but it is confirmed that I will need to be on a PICC line for 6 weeks with I.V. antibiotics and steroids when I get back to Texas. The doctors were able to drill out a vast majority of the infection and the I.V. treatment should help with recurrence of osteitis. My neurosurgeon is sending me to a infectious disease doctor this week before I leave town. Radiation treatments cannot begin until the infection has cleared up.


Friday, July 29, 2011 6:38 PM, CDT
written by Alecia E.

Going Home
I had my visit with the ID doctor on Wednesday. I may not have to be on I.V. meds afterall because most of the infection was removed during the surgery. She placed me on oral antibiotics until the final culture results come in. This will be discussed further with my doctors in Dallas and Houston. Also, I met with my neurosurgeon today. I have residual tumor on the left/right carotid artery and cavernous sinus. At this time it is believed the tumors are benign, but they are agressive in nature. My doctor said to see him in 3 months for a follow-up MRI and we will discuss radiation treatment at that time. I have developed a cough, but overall I am feeling very good. I was given clearance to go home tomorrow. There are many appointments to be made once I get back in town. Thank you everyone for your support!

Night Before Surgery

I just received a phone call from the nurse, and I'm all set for surgery tomorrow afternoon. I met with my surgeons last week. They expressed a high level of confidence regarding the outcome of my surgery, but unfortunately, the recovery may not be as easy this time. In addition to having tumor recur, I've been diagnosed with sphenoid osteitis. I've had continual bone growth under my brain that is walling off a pocket of infection in the bone (that has been present since my surgery in 2005). I will be on an I.V. antibiotic post-operatively for six weeks to stop the osteitis from reoccurring. Also, my neurosurgeon does not think he can remove all of the tumor, but he will remove most of it. There is an area of tumor growth behind the left carotid artery and next to my temporal lobe, which is not accessible. All my pre-op labs look good, and my hormone levels are within normal limits. However, these are some of the highest numbers I've had post-operatively since 2005. Here are the pre-surgery hormone levels: IGF-1 255,  GH 4.9, and Prolactin 10.5. My previous labs can be viewed here:  My IGF-1 Levels I'm uneasy because these results could indicate the tumor is functioning again. If I weren't scheduled for surgery right now, I would be scheduling an appointment with my endocrinologist to discuss the increase in my levels. I think I made the right decision in moving forward with the operation. I hope for a successful outcome and effective medicine to knock out the bone infection post-operatively.

Brain Surgery - Here I Go Again

I've spent the past few months preparing for surgery. Well, I haven't done anything elaborate other than making hotel reservations, fill my calendar with appointments, and turning the pages, wondering if I'm living my last days. Daily I wonder, "What would I do if I only had (fill in the blank) days left to live?" and conclude I wouldn't do anything drastically different. I'm keeping life simple and embracing each day - whatever it brings.

I recently changed my daily routine and started running with my children in the morning. It's been a good way to get rid of stress. We've talked about doing a 5K together, but it's just talking now. I've been entertaining this idea for quite some time. We'll see what happens after my surgery. In any event, it's something for me to look forward to. My surgery is planned for mid-July. I'm nervous but believe I am in good hands and continue to hope for the best.