Even Still, I Am Well

"I am well."

These are the words I say when I'm asked, "How are you?" I decided this would be my steady reply to any who would ask because if I were to say how I am really doing (health-wise), there would not be enough time in that moment to answer in detail.

For the last ten years, my posts frequently included a victorious shout, "All hormones are normal!" Now, this is changing - but why complain? After all, my tumor is shrinking, and hypopituitarism is treatable. I don't know how to write without sounding upset or defeated. I know this is really common, but I'm disappointed. Before I began radiotherapy, I was told my hormones would decline due to the treatment, but I remained hopeful (or in denial). After all, my gland survived two major surgeries, and I thought maybe Proton Beam Radiation would somehow make a difference in the longevity of my pituitary function, too. I remind myself this was not the reason why I went to MD Anderson, for it was the tumor, not an excess hormone, that threatened my vision and the structures in my brain. At least, it appears the radiation treatment was not all for naught and has shown to be effective in stunting the growth of my tumor. Also, I can safely say I am in remission from acromegaly (I have been for years). My IGF-1 level, now 58, continues to drop, so at this point, it appears I will not have to deal with excess growth hormone again. Ironically, now GH deficiency is a concern, but I will not be taking GH replacement.

When I joined a pituitary group several years ago, I read stories from people regarding a delayed diagnosis of a pituitary tumor and the difficulty of living with hypopituitarism. Yet, I could not relate because my hormone levels were normal. I wrote about the fear I had anticipating brain surgery. Never mind how benign, and treatable a pituitary tumor is; the thought of a knife going into my head was terrifying. But, hypopituitarism was not on my list of troubles. For anyone new to my blog, I recommend joining a support group or keeping a journal about your experience. One of the things I appreciate about the Acromegaly Community and other pituitary groups is how many people from different walks of life can come together on this topic of pituitary disease and connect with the idea of bringing awareness and helping others. There is a common thread of struggle and empathy among pituitary patients. I've learned a lot and am grateful for those who have shared their stories (AcromegalyCare) and the doctors involved in support groups like the Pituitary Network Association. Their encouragement and resources have enabled me to deal with what I'm experiencing today. Their knowledge has given me the ability to communicate with my doctor and understand as best I can what is happening with my health (Informative video - "Understanding Hormones and Their Effect on Quality of Life").

I'm still running a couple of days a week, and overall, I feel alright despite the changes. The hormone therapy helps my energy level. My kids and life, in general, keep me active and busy. I remember where my heart was at the beginning of this journey, after my first brain surgery in August 2005. I am thankful to God for carrying me through and reassuring me by his Word that even if my tumor grew back, and all efforts to save my pituitary gland failed, his grace is sufficient (2 Corinthians 12:9). In this promise, my hope remains. Listen: Why Suffering?

"When peace like a river, attendeth my way, When sorrows like sea billows roll Whatever my lot, thou hast taught me to say It is well, it is well, with my soul..." - Horatio G. Spafford

Update - Ten Years Later

It has been a while since I've written a lengthy post. I appreciate your concern for any of you checking my health blog for updates. This year marks ten years since I was first diagnosed with a pituitary tumor.

The protocol since my radiotherapy in 2012 has been to monitor tumor growth via MRI and pituitary function through lab work every six months. Instead of returning to MD Anderson Cancer Center this year, I followed up with my neurosurgeon in California. The MRI report describes the residual tumor in my left cavernous as inconspicuous. When comparing the results to previous MRIs, it appears to have melted away (time will tell if it has). There is still a remnant of tumor on the right side of the sella floor that is visible, but this, too, is shrinking and possibly half the size it was before radiation. The tumor is responding to proton radiation treatment.

 My pituitary gland does not look normal, though it hasn't looked normal for some time. It is still functioning even though it is smaller and flat on the sellar floor. Apparently, the position of the pituitary is irrelevant so long as the labs continue to show the gland is functioning fine. As of today, this is the case. I still retain the complete gland function and am not on any hormone replacement now. My prolactin level continues to climb but remains within normal limits (high normal). I don't know when/if or which hormones will take the plunge first, but there is a hint that my gland may be struggling; my last IGF-1 was 66. After radiation treatment, my IGF-1 was 190. Since then, my level continues to drop and  stay below 100 this past year. For the most part, I don't feel different post-radiation. The main symptoms I've had since my treatment ended are increasingly low energy and mild weight gain. My headache problem is gone. I don't think the lower growth hormone level entirely causes fatigue or weight gain. It could be a contributing factor, but it's only one of many. Other causes could be age, stress, lack of exercise, and diet.

In May, my energy returned, and warmer weather settled in. I'd had enough of the weight gain and was determined to implement changes to my daily routine and began running 2-3 days a week. Also, I cut back on the number of carbohydrates I ingest. The simple changes I employed made a difference and are helping. I've lost over 10 pounds since June and feel pretty good these days.

I follow-up with my endocrinologist in a few weeks and will continue to do so every six months. I do not have to return for a MRI for two years.

My IGF-1 (Somatomedin-C) Levels

My pituitary tumor is considered a plurihormonal adenoma which means it excretes more than one hormone: prolactin and growth hormone. Pathology reports confirmed this in two surgeries.

 Click on the graph to enlarge
 

Please note what is considered a normal range for IGF-1 can differ among labs and depends on age. There are many variations on what is considered "normal". My most recent result is 74. The lab work processed by the Mayo clinic through MD Anderson Cancer Center says the standard range for my age (42 yrs) is 62-205 ng/mL. Last year MD Anderson's range was 106-277. It is likely that the downward trend in my recent results is due to radiotherapy treatment.

Click on the graph to enlarge

I haven't taken any medication to control excess hormone excretion. My tumor is deemed "partially functioning" which means it excretes excess hormone sporadically. After surgery in 2005, my hormone levels consistently stayed within normal range despite continued enlargement of my tumor and invasion into both cavernous sinuses and clivus. If doctors looked for residual adenoma solely on the basis of my lab results, they wouldn't find it. Interestingly, this past year my prolactin levels have increased, but MRI images show my tumor as stable and/or possibly shrinking.

Rest in Peace, Richard Kiel

I read in the news this afternoon that Richard Kiel - AKA "Jaws" - died yesterday.

Link: Richard Kiel, who played lovable giant ‘Jaws’ in ‘James Bond’ films, is dead

I remember him most from his role as the evil villain, Jaws, in the James Bond movies. Shortly after I was diagnosed with acromegaly, I discovered I had the same disease as him and was fearful of what might happen to me if my tumor did not stop producing excess growth hormone. Would I become a giant, too? As time passed, I realized my situation was entirely different from his because my tumor began excreting excess growth hormone in my twenties - after my growth plates hardened. The photo I posted above is a keepsake I purchased from his website a couple of years ago. Nothing about acromegaly is mentioned on his site, but he does share his testimony about becoming a Christian and being delivered from alcoholism (with God's help) many years ago. Even though Mr. Kiel had acromegaly, he lived 74 years old - which is an inspiration in itself. His family posted a message on Facebook regarding his passing. You can read their announcement here.

The Pituitary Gland and Hormonal Related Disorders

Endocrinologist Dr. Pejman Cohan spoke at Saint John's Health Center earlier this month for the Pituitary Tumor Patient Support Group in Southern California. I found this to be an extremely helpful and informative video on pituitary tumor treatment, hormone imbalances, and quality of life.

Pituitary Gland and Hormonal Related Disorders and How they Affect Our Quality of Life

 

Empathy: The Human Connection to Patient Care

This video is a good reminder that often times we have no idea of what people have gone through or what their current struggles are. Empathy, patience, and compassion makes a difference.

Update: 7 Months Post-Radiation

I had my follow-up appointment with my oncologist at MD Anderson Cancer Center today and could not wait to share the results. Time will tell, but already there is a subtle indication that the tumor may be shrinking. My MRI reports says the residual tumor is stable and appears less prominent along the left cavernous sinus region.

Here's the MRI comparison (not exact - but close):

Click on the image to enlarge

Also, my pituitary is still functioning with no indication of damage. All hormone levels are within normal limits and my IGF-1 dropped from 190 to 156. I'm still experiencing random headaches and bouts of fatigue, but not to the degree that I had during or shortly after radiation. Overall I feel pretty good and am thankful for the great news. I return to Houston for another follow-up in 6 months.

**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 due to the fact that 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 in the normal range 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.

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.