Thursday, August 29, 2019

Stress Management - Painting Happy Trees

"You have to have dark in order to show light...it's just like in life" - Bob Ross

Bob Ross is one of my favorite artists. I've always wanted to learn how to paint landscapes like him. I took various art classes in college, but it's been a couple decades since I've picked up a paint brush. My imagination has been mostly focused on arts and crafts with my kids. Last year, I was feeling motivated to start a new hobby and have some fun with my youngest daughter. I purchased some paint brushes, canvas, and a Bob Ross paint set. Oh, and there were Bob Ross wigs to wear, too! My daughter loved it and now painting is one of our favorite pastimes together. I've never used oils before, but it has become my preferred medium. The only drag is we make a huge mess and the clean-up takes a long time! I don't have a room dedicated to painting, so we paint on the kitchen table with lots of drop cloths around us.

Here's my first oil painting: 

Reflections of Calm - June 2018

Claude Monet, another favorite artist of mine, is featured in a local art museum right now. Monet's paintings of his lily ponds and the outdoor scenery of his home in Giverny are so lovely. What a thrill it was to view his masterpieces in person and read about his life in the exhibit. I am inspired and hope to spend more time painting. It's a good way to relieve stress and if I make a mistake, I just turn it into a happy little tree. As you can see from my painting above, it actually works!

Wednesday, August 28, 2019

14 Years of Living with Pituitary Disease


 Click on the graph to enlarge


This month marks seven years since my Proton Beam Radiotherapy and 14 years of living with pituitary disease. Dealing with hypopituitarism (caused by radiation treatment) continues to be a challenge, but hormone replacement has successfully returned my energy and overall sense of well-being. I'm taking medication for secondary hypothyroidism and still have mild adrenal insufficiency. I do not take steroids unless I'm sick (flu) or surgery is needed. My ACTH levels are stable and my AM Cortisol levels are pretty good at the moment. Whether I am in menopause as a result of my dysfunctional pituitary gland is a toss-up. My symptoms match the diagnosis, but my FSH is too low for the GYN to call it (I suspect it will never be high - time will tell). Also, I've been having problems with my right ovary due to recurrent and persistent hemorrhagic/sometimes complex cysts for which I have been referred to surgery for. As a last ditch effort, I began HRT this summer to see if it resolves the problem without surgical intervention.

My IGF-1 levels have remained low. My prolactin levels vary, but have stayed in the normal range. In 2017 my MRI report said tumor was not seen, so unless my labs differ from what is the norm for me, or my endo suggests it, I've opted to wait on any further MRI screenings for tumor.

Saturday, March 16, 2019

Needed: Adrenal Insufficiency Awareness

As I mentioned in an earlier post, I was diagnosed in 2016 with secondary adrenal insufficiency (AI) due to radiation treatment for my pituitary tumor. This was confirmed after having two ACTH stim tests. I'm writing this post mainly to work through my thoughts regarding a recent trip to the hospital for the onset of adrenal crisis.

Thankfully it has been a couple years since I've visited the ER needing a bolus of steroid. I only take my medication as directed for certain incidents of stress or illness (which is rare). I was diagnosed with Type-A flu at the end of January and began steroid treatment. The sickness quickly progressed to a secondary upper respiratory infection, but I weaned off the steroid as directed once I was on the antibiotic and symptoms improved. Unfortunately, sinus congestion did not clear up all the way and infection returned. Because I began to feel progressively worse, I started taking hydrocortisone again and was given another round of antibiotics in the urgent care. Following the visit, I met with a GP and was advised to stop the steroids; I wasn't taking a high dosage, so we agreed it was probably safe to do so. Two days later, in the middle of the night, I was taken to the ER due to excessive nausea, vomiting, dizziness, and extreme weakness. I could barely walk. As per my instructions regarding AI, if vomiting is occurring, I'm supposed to take hydrocortisone. If I'm unable to keep the tablets down, I must to go to the hospital for stress dose steroid treatment.

My husband called 9-1-1 due to the severity of my symptoms.  When the paramedics arrived, they were informed by my husband that I was a patient with adrenal insufficiency and needed stress dose steroids. They found me lying on the bathroom floor, hunched over, a bit confused and trying to respond to questions as I continued to vomit in front of them. They did not know how to treat adrenal insufficiency and did not administer steroids. An I.V. was started in the back of the ambulance and they gave me anti-nausea on the way to the hospital. I requested they take me to a nearby hospital that I've been to before so steroids could be given immediately. Unfortunately, my established medical history did not make a difference. Upon arrival to the ER my husband informed the nurse of my condition and that I needed a stress dose steroid, but she did not respond to his request and said the doctor would evaluate everything and make a decision. Instead of giving steroid treatment first, they wanted to rule out other causes for my symptoms. Blood was drawn (minus ACTH and Cortisol level) and an EKG was ordered. No one looked at my medical ID bracelet, and the doctor did not give permission to treat immediately. Almost two hours passed before a bolus of Solu-Cortef was administered. Once the medication was given, my condition stabilized. Not long after I was released and walked out of the hospital on my own.

As the brain fog lifted and I began to process what happened, I realized EMS is not properly equipped to handle an adrenal crisis. Word of mouth, a medical ID bracelet, and historical records are not enough to convince hospital staff that treatment for adrenal insufficiency should begin with a hydrocortisone injection before ruling out other causes. After my last hospitalization (2016), I took a hospital survey and stated that there needs to be more awareness about AI. To my disappointment, this did not change anything regarding the way I was treated - even with an established record.

I will be meeting with my endocrinologist for follow-up to discuss how best to handle this situation should it happen again. Read more on this: Understanding Adrenal Insufficiency and Secondary Adrenal Insufficiency - What You Need to Know

Saturday, February 16, 2019

Video: Endonasal Endoscopic Surgery

I launched this blog in 2006 and have been living with pituitary disease for 14 years now. Today I feel physically better than I did at diagnosis (May 2005) thanks to the amazing doctors helping me in this journey. It started with Dr. Daniel Kelly and his team in Southern California. If you're newly diagnosed and have questions about your diagnosis, there is hope and you can live with this kind of tumor. As I discovered early on, it's good to get informed and understand your condition - questions you may have are real concerns and worth researching. The Pacific Neuroscience Institute in Santa Monica, CA has a trove of information and support regarding all things pituitary.

Check it out:

For more information visit: Pacific Neuroscience Institute or see more general links on the right of my blog.


Saturday, January 26, 2019

When Breath Becomes Air

I just finished reading When Breath Becomes Air by Paul Kalanithi. The author is a neurosurgeon who is diagnosed with and eventually succumbs to stage 4 lung cancer. In his book he gives a detailed account regarding his time in residency and raw depictions of the medical procedures required in order to obtain his medical degree. Oddly enough, some of what he wrote about regarding the brain I've become familiar with. The many years of living with a pituitary tumor has given me a basic education on the structure and function of the brain, so I could envision to what he was describing; however, his narrative is so thorough that you don't have to be a brain tumor patient to understand. By relaying his own experience with sickness and death, Kalanithi's book sharpened my focus all the more by reaffirming my resolve to live contentedly with pituitary disease and see there can be is hope in suffering.

As I neared the end of the book, especially when reading the epilogue Dr. Kalanithi's wife wrote, streams of tears rolled down my face at her description of his final days. My aunt died from stage 4 cancer last summer, so much of what Dr. Lucy Kalanithi wrote was strikingly similar to my aunt's experience - the chemo treatments, trips in and out of the hospital, and the quick break down of the body as death approached. I found a measure of solace in the book and the authentic way in which Dr. Lucy Kalanithi writes about her husband's death (and the days that followed it...). Her words may be helpful for anyone dealing with chronic illness or cancer.


If you have not heard about this book, I'm posting the trailer as an introduction and a recommendation to read. Link to purchase: When Breath Becomes Air

In this next video, Dr. Lucy Kalanithi speaks about her late husband's book: 



"Engaging in the full range of experience - living and dying, love and loss - is what we get to do. Being human doesn't happen despite suffering - it happens within it." Listen to Dr. Kalanithi's moving speech featured on TED Talks: What makes life worth living in the face of death | Lucy Kalanithi

Tuesday, March 27, 2018

Managing Hypopituitarism

"Alecia, wake up! Alecia? Come on, it's time for bed - get up!" my husband said as he tried to wake me from a long evening nap.

"Mom...? Are you alright?" My daughter asked with concern.

I sat up and exclaimed, "I'm alright!"

Laughter ensued as my family took a picture. I stumbled through the hallway and collapsed into bed for the night. The next morning my husband showed me the photo and I was mortified (and a bit humored) at the sight of how terrible I looked. It wasn't just that it was obvious I'd been sleeping and my hair was going in every direction - I could see the weight gain, my swollen eyes, and chubby cheeks from the edema that was part of my daily experience during this time. I was exhausted and this photo put into perspective the change that was happening as a result of my hormones starting to fail.

In 2016, as hypopituitarism began to set in, I experienced myriad symptoms which initially made it difficult to diagnose because they were very general and common. Although my labs kept coming back in the normal range, the results were declining from my previous years and were low-normal. The protocol was to check hormones every 3-6 months. At each appointment, I explained my symptoms to my endocrinologist and he listened and was never dismissive of anything I told him. This was especially true when my husband gave his insight on what he was seeing at home. At times I found it difficult to articulate exactly the magnitude of the symptoms I was having, so when my pituitary function began to decline it helped when my husband joined me at my doctor appointments. During one visit, he shared with the doctor the picture I described above to get his point across.

I do not have panhypopituitarism right now, but it is expected in the coming years. Currently, I am on full thyroid replacement because my TSH is practically at zero. IGF-1 is still low at 58 and the other pituitary hormones are still being produced (to some degree). My adrenal insufficiency is mild. I only take hydrocortisone as needed right now such as when I am ill with fever or major surgery, etc. which thankfully is not often. Hormone replacement has helped me tremendously and I went from complete exhaustion and sickness to feeling 99% normal again.

A few things that aid me in this chapter of living with pituitary disease (besides the medicine):

1. Read, read, read anything I can get my hands on to learn about the function of the pituitary gland. The internet is also replete with helpful videos on the function of the gland. This way I can understand what the doctor is explaining when he gives me reasons why or why not he treats me for a symptom or adjusts my medications. Patience and communication is important. The pituitary gland is an incredible organ (!) and it is nearly impossible to replicate it's function perfectly. It takes time for the medication to work.

2. Hearing or reading about another patient's experience is helpful. Support groups, whether it is online or in person, helps cope with this disease. This month I attended a pituitary support meeting in Southern California via Facebook Live. Through the years, these support meetings, which are hosted by Sharmyn McGraw, Dr. Daniel Kelly, Dr. Pejman Cohan, and other doctors or professionals at the Pacific Neuroscience Institute, has provided an invaluable amount of information and support to patients regarding the treatment of all things pituitary gland tumor. It was great to be able to participate in this meeting from out of state.

3. Running or exercise has been a good way for me to deal with stress and weight gain. Prior to my diagnosis of hypopituitary I gained at least 20 pounds. Running is something I began to do before and after my 2011 surgery - when I had the strength to do it. I've been running off and on ever since then, but I'm exercising more this past year since my hormones have balanced. I've lost some weight as a result. Earlier this month my family and I participated in a 5K:


Here is an entry in my personal journal I wrote after the event took place:
Tuesday, March 13, 2018
I participated in the BT5K event for the American Brain Tumor Association. For the past few months I've increased my time and distance on my runs and built up enough strength to join a 5K.  I've been looking forward to participating in this kind of an event for years. The end didn't quite work out as I thought. I was so sore [from running] I could hardly walk the day before the event. I nursed my pulled muscles with ice packs and prayer and purchased a brace to help with the leg and back pain. 
The morning of the event,  I was still sore, but feeling better and determined to run with my music playlist carrying me through the event. I'd never run with a brace before, so it was a nagging distraction because it constantly inched its way up my waist refusing to stay put during the 5K. As I neared the finish-line, my playlist stopped working at the very moment I was to exert all my energy and run as fast as I possibly could to the end. I was forced to finish with no music, exhaustion, and the heat bearing down. So I began to think of scripture (Hebrews 12:1-2, 2 Corinthians 12:9) and just prayed. I realized in the moment it was probably good the music stopped because I was more tuned into my increasingly strained muscles and didn't overdo it. Also, I could hear the cheers of the people waiting at the finish-line and didn't care anymore about my time, whether I could run or walk - just that this race was over and now I could rest.  
I didn't really consider the BT5K a race, but merely a way to challenge myself to beat or run/walk my usual time for 3.12 miles. My best time when I run at home is 00:38:34, but the day of the BT5K it was 00:42:09. Nevertheless, I'm grateful to have been able to run. I wanted to show support for this organization and bring about awareness for pituitary tumors and acromegaly. This was a wonderful event and hundreds of people showed up to honor a loved one who has succumbed to a brain tumor, or currently battling one.  More information about this organization is here: abta.org


Monday, February 05, 2018

Stable Scans!

Redondo Beach, California - August 2017
I had a follow up with my neurosurgeon in California last summer and my MRI report says there is no evidence of recurrent disease. Regarding certain areas where tumor remained, the report states, "Previous tiny hypoenhancing focus along the right sellar floor is not seen on today's study." Any residual tumor that is present is still stable and/or continues to shrink. I am still on a 3-6 month recall with my endocrinologist because my pituitary gland's function is slowly diminishing. Hormone replacement is adequately helping me feel completely normal. I'm truly grateful for the progress I've made and for the doctors that helped me get to this point! In March, I will be participating in the American Brain Tumor Association's BT5K to show support for people diagnosed with brain tumors. This is something I've wanted to do for years. Thanks be to God that I can run/walk in this event!

Thursday, December 21, 2017

Hope in the Midst of Grief

Through the years I've found Nancy Guthrie's story to be a source of consolation when dealing with grief. Her book, O Love That Will Not Let Me Go, is something I kept my nose in when I was going through radiation treatment. Sitting day after day among patients who were battling cancer was an emotional time and gives perspective on how fragile life is. In this video, Guthrie discusses her life experience in losing two of her children after they were born. Although her story of suffering has not come by way of a pituitary tumor, her message may be a comfort to anyone who has lost someone they love.

Video not working? Here's the link: Hope in the Midst of Grief


Tuesday, August 01, 2017

TEDx Video: Proton Beam Therapy


TEDx Talk - Scott Hamilton on Proton Beam Therapy (Sept. 2015)

Having received Proton Beam Radiotherapy in Houston, TX, I found much of this TEDx talk to be helpful in understanding how proton radiation works. Scott Hamilton's story about living with cancer and his pituitary tumor is inspiring. Read more about it here: Scott Hamilton Cares.

Five years have passed since my radiation treatment at MD Anderson Cancer Center. My vision and hearing are still intact. I will be traveling to California this month for a MRI and follow-up with my neurosurgeon to determine the status of my tumor. My last scan was in 2015 and the report suggested my tumor was shrinking. As expected, my pituitary function is failing because it was in the field of radiation, but my quality of life is still good on hormone replacement. I am hopeful the news is the same and that the proton treatment I received successfully stabilized my tumor.

*Note regarding comment in video about insurance coverage: After my brain surgery in 2011, I had residual tumor growing less than 2 mm from my optic nerve, so the risk of going blind was high. A need for proton beam vs. stereotactic radiosurgery or stereotactic radiotherapy had to be established with my insurance carrier. Initially, they denied the coverage for proton radiation; however, I petitioned and they reversed their decision after my oncologist further explained the benefit of this type of treatment.

Friday, March 24, 2017

Growth Hormone - Should You Replace It?

If you have not heard of or visited the Pituitary Network Association's website, I would encourage you to do so and keep it on your list of resources. Periodically PNA hosts webinars featuring doctors specializing in treatment for diseases of the pituitary gland. Here's their most recent video on growth hormone deficiency. This webinar is insightful regarding the power of growth hormone and the tremendous effects it has on body.

(Video length is 1:20:49 - Q & A begins at 47:57)