My Acoustic Neuroma Journey

May 7 - 13 is Acoustic Neuroma Awareness Week so I thought I would write a blog sharing information about my journey with an Acoustic Neuroma. I realize that I have shared some of my journey, but not everyone has received a complete story and with Acoustic Neuroma Awareness Week, there is no time like the present to share.

An Acoustic Neuroma is a rare benign brain tumor that grows on the 8th cranial nerve (a nerve the comes off the brain stem). This nerve, known as the Vestibulocochlear Nerve has two divisions, the Vestibular Nerve responsible for balance (one of the 3 sensory systems for balance) and the Cochlear Nerve responsible for hearing. Interestingly, the Acoustic Neuroma is located on the Vestibular Nerve despite its name that gives the impression that it is located on the nerve for hearing. Technically, an Acoustic Neuroma is known as a Vestibular Schwannoma because the tumor is actually an overgrowth of Schwann cells (cells that are responsible for "insulating" a nerve to allow for a more rapid conduction of the impulses). The reason it is commonly called an Acoustic Neuroma is because the most common symptom is single-sided loss of hearing. The occurs because the Vestibular and Cochlear nerves enter the skull to the inner ear through the same hole (Internal Acoustic Meatus) and the tumor of the Vestibular Nerve puts pressure on the Cochlear Nerve, resulting in hearing loss.

Image from https://www.slideshare.net/sriloy/cranial-nerves-14327363

Other symptoms that could result include tinnitus (ringing the ear), feeling of fullness in the ear, loss of balance, dizziness/vertigo, facial numbness/tingling, headaches, facial weakness (very rare - the Facial Nerve which controls the muscles of facial expression is also located in close proximity), and taste issues (the Facial Nerve is also responsible for taste in the anterior 2/3 of the tongue). What is crazy is that everyone's symptoms are different and the symptoms don't necessarily correlate with the size of the tumor. Additionally, progression of symptoms do not necessarily indicate tumor growth.

My acoustic neuroma was discovered because of my single-sided loss of hearing. It was about nine years ago that I first started experiencing symptoms, but  remember it very vividly. At the time, I was working at CSUSB as the Fitness Coordinator, a part-time lecturer in the Kinesiology department, and the Assistant Coach for the Women's Cross Country team. I was sick quite frequently so I thought my hearing was impaired in that ear because of congestion. Fast forward 2-3 years and I was just starting my MS degree at CSU Fullerton. I was sitting in my Advanced Sport Psych class playing telephone as an once breaker exercise. When my classmate whispered into my left ear (the ear with the tumor), I couldn't understand what was said to me. I had no idea my hearing was that bad. It was a scary experience for sure, but of course I didn't do anything about it in the immediate future. Eventually I went to my GP and she thought I may have Eustachian Tube Dysfunction. It my mind, this made perfect sense. My mom and sister both had surgery for narrowed sinuses so, why not me? I started taking sinus meds, but they ended making me feel terrible and my hearing didn't change so I stopped taking them. I never followed up with an ENT, however. Fast-forward a couple years and now I was working on my PhD at USC. I had a transient vertigo episode and it freaked me out because my husband, Chris, had found information about Acoustic Neuromas and shared this information with me. I went to the health center, received a referral to an ENT and didn't take it any further. I let the busyness of life take priority. A year later, I had another momentary vertigo episode and went to the health center once again, was told I was likely dehydrated and that was causing my hearing loss. Luckily, I knew this was an absurd reason for my hearing loss and finally went to go see an ENT. 

In April 2016, I saw an Audiologist and was told I was legally deaf in my left ear. I could hear tones, though my abilities were reduced, but I had zero speech discrimination. This means I could hear sounds when someone spoke, but couldn't tell what was being said. This news was quite shocking to me. I knew my hearing was bad, but I didn't realize it was that terrible. Chris wasn't surprised however. I guess all of these years he would call me multiple times and I had no idea. All this time I thought I was hearing him right away, oooopppsss.

An Acoustic Neuroma is diagnosed with a MRI. I had an appointment with my Otolaryngologist, Dr. Elina Kari, and she told me she wanted me to get an MRI with contrast. She explained that they could do an MRI without contrast; however, if anything came up on the MRI, they would have to do a second MRI with contrast. She told me that I might as well just do it as contrast; I knew at that point that she thought I had an Acoustic Neuroma. It was at this point that I decided to tell my family that there was a chance I had a tumor and that this was likely causing my hearing loss. I figured it was best to prepare my family for the worse while we awaited the MRI results. 

On May 5, 2016, I received a phone call from Dr. Kari, they found a 2 cm tumor (about the size of a boulder marble...the big marbles that we used to try to knock our marbles). No wonder it felt like I had a marble stuck in my ear all these years, haha. The tumor was located in my internal acoustic meatus and was "spilling out" towards my brainstem similar to the image below. 

Image from https://makemehear.com/adults/acousticneuroma

Dr. Kari then took the time to address my treatment options. The first option was watch-and-wait meaning I would get scans every 6 months or so to monitor the growth of my tumor. Since this was my first MRI, they had no idea how quickly my tumor was growing and we wouldn't know until I had a scan at another date. I decided against this option, after discussing with Dr. Kari for two primary reasons. First, given my age, I would eventually need to get it treated. My tumor was already considered to be moderate in size and if the tumor grew too much, it could put pressure on my brainstem and become life-threatening. My second reason to opt out of watch and wait was that if I eventually chose surgery, my outcomes would likely be better since 1) I was young and 2) I didn't have any dizziness/balance symptoms. When these symptoms would appear was completely unknown (if they ever would), so with watch-and-wait I risked getting worse and also risked having worse outcomes following surgery in terms of long term balance. 

My second-option was gamma knife, a form of radiation treatment. After discussing with Dr. Kari, her and I both came to the conclusion that this wasn't the best option for me. She expressed that gamma knife has positive outcomes in terms of recovery, but she wasn't comfortable with this as my treatment given my age. There were no current long term outcome studies investigating the long-term effects of gamma knife. However, there is research that suggests radiation could eventually result in healthy cells becoming cancerous (rare but a possibility). I was familiar with this because of my reading about Angiosarcoma with Tory was diagnosed. Secondary Angiosarcoma of the Breast occurred in Breast Cancer Survivors that were treated with radiation. Thus, given my discussion with Dr. Kari, I decided to not go forward with gamma knife. 

My final option was surgical removal of the tumor. I would have a team of surgeons that were part of the USC Acoustic Neuroma Center that would open my skull and remove the tumor, essentially, my final option was brain surgery. There are multiple approaches to the surgery and since I was already deaf in my left ear, they would use the Translabyrinthine approach. This approach would completely destroy my hearing; however, it had a reduced risk for post-operative headaches and facial weakness. Facial weakness looks like you had a stroke, impairing your ability to fully smile and close your eye. This is ofter transient and will recover within a year, but in some cases additional therapy or surgery is required to restore the function of the Facial Nerve. While the risk for facial weakness was still a possibility, the risk was dramatically reduced. 

On June 7, 2016, I had surgery to remove my Acoustic Neuroma. The surgery would last 3-4 hours. This was a really fortunate scenario as the USC Acoustic Neuroma Center is a team of world-renowned surgeons that perform the greatest number of AN surgeries in a given year (out of University hospitals) that have perfected the art of the surgery to limit surgery time and post-op hospitalization. At other hospitals, this surgery could take 12+ hours. I was thus very thankful that I would only be in surgery for 3-4 and I am sure my family was very relieved as well, probably moreso than me!

Because I am an anatomy nerd, I can't skip over the surgical approach. The surgeons entered my skull just below the tip of my ear (mastoid process) as this is where the Facial Nerve exits the skull. They then drilled through my skull, following the Facial Nerve, to make sure it was protected. As a result of this path, the inner ear is essentially destroyed. To enter the brain, they then cut through the protective covering (dura mater) to visualize the tumor and where my nerve comes off the brain stem. The tumor was then removed often resulting in the removal of the Vestibular Nerve. The tumor was then removed often resulting in the removal of the Vestibular Nerve. This is an extremely delicate process as the nerves are very tiny and everything is in very close proximity. I had a hard time isolating these nerves when I was working on a cadaver....I can't imagine a live human being!  In order to close everything up, they took fat from my abdomen to pack in my skull (yes, I am officially a fat head) to reduce the risk of a CSF leak. A titanium plate was placed in my skull and the skin was closed over the plate, leaving me with a gnarly scar that looked like a mini shark bite. 

Abdomen Scar for Fat Graft 

Shark Bite..I mean surgery scar

The guaranteed side effects of the surgery with vertigo/dizziness, loss of balance (essentially needed to relearn my balance to walk), and complete loss of hearing. Potential side-effects/complications were facial numbness/tingling, facial weakness, headaches and alterations in taste. I was incredibly fortunate in that besides the guaranteed side-effects, I had no facial weakness/numbness issues and only had a transient alteration in taste (food tasted incredibly salty!!!). I am so thankful to my surgeons and God for allowing for a complete removal of the tumor without any unexpected complications!

The first 12-24 hours of recovery in the hospital were TERRIBLE. If I opened my eyes, I swore everything, I mean everything was spinning. This made me immediately sick. I have never been so sick in my entire life...it was such a hard experience. My dear husband was so amazing through it all. He just sat by my side, held my hand, and watched me sleep for hours. When I got sick, he was there to help, and this is a job I wouldn't wish on anyone. I can't imagine my recovery without him. It was at this stage that I had no idea how I was going to wake up the next morning and complete my physical therapy. I couldn't open my eyes, let alone sit up and I was supposed to walk the next day. It seemed like a very daunting task. I couldn't even roll over in bed without getting sick, any sort of head movement resulted in the worse feeling of the "spins." This was all occurring because the surgery damages/removes the vestibular organs on the surgical side, resulting in my brain needing to learn to adapt to half of a vestibular system. 

The next morning came and sure enough, I had PT. My Physical Therapist was the amazing Dr. Libby  Krause and she was accompanied by one of my former students who was completely her neuro inpatient rotation as part of her DPT. Both were so unbelievably amazing. They got me up and walking! I was able to walk 50 feet with assistance and felt incredibly accomplished. It was a totally weird feeling and I probably looked like a druken sailor, but I did it! During my walking experience, I didn't necessarily have distinct vertigo/dizziness. It was a different feeling. I now use the term "wonky head" to describe this feeling. It's like you aren't a part of your body and the world is moving fast but you are moving in slow motion. I still experience this feeling from time to time, so I ever say I am symptomatic or dizzy, this is how I feel. 

I was only in the hospital for 3 days. I was admitted on Tuesday and released on Thursday! I was so excited to go home. It was so amazing to see and feel how quickly my brain was adapting. When I got home, I had work to do. Walking was still difficult, especially at dusk. During this time, there was enough light that my brain wanted to use my eyes for balance, bit not enough so my impaired vestibular system was trying to take up the slack. I also would stumble or drunk walk when I would turn my head during walking. There was no way I could drive because the head turns made my dizzy and if I was pulled over there was no way I could pass a field sobriety test, believe me I would try walking in a straight line at home and it was an immediate failure haha. 

With time and vestibular therapy, my balance improved and my frequency of wonky head decreased. Every month, around the anniversary of my surgery, I tried to do something "big." I think my favorite memories are the Lake Gregory 5K two-months post-op, my first mountain bike ride, and my first time back on skis. I look forward to many more adventures! 

Two-months post-op after my first 5K back!

So, what does my future hold....continued growth and learning. I go in for a scan after the baby is born to check to see if there is any regrowth.  If this MRI comes out clear, I won't have to return for a scan for 4 more year. I am getting used to my single-sided deafness (not much different than before). I also had a secondary surgery for an implant for a bone-anchored hearing aid (looks like a bluetooth). This helps a lot in loud environments. I am also continuing to learn to live with my "new normal." My balance will never return to 100%, but it will continue to improve. Additionally, while my wonky head will reduce in frequency, stress, exhaustion, sickness, or particular environments/situations will trigger my symptoms and I will have to used my strategies to help me improve. Really, the majority of my recovery will be about acceptance, learning, and growth. 

I know this blog has been long, but I wanted to end with a honest reveal of my feelings and thoughts through this process. Thank you so much for taking the time to read.

What I Struggle With

• I get frustrated when I can't do things that use to come easy. I.e. lunges have become challenging to perform. I believe God blessed me with physical abilities and it gets hard when the things that used to be easy are now very challenging. 
• The most difficult part of recovery has been that I have an "invisible" impairment. I look totally normal on the outside, and for the most part, I feel good; however, on my bad days I look no different. People (except my hubby) can't tell when I have these "bad days" or when I don't feel well and I don't really mention it when I don't feel great. Therefore, I go on with daily life feeling not completely understood.
• "Bad days" come and go and this is hard to accept some time. Other than my hearing loss, I felt normal before surgery. Surgery actually makes you "worse"....it saves your life though. It is learning to accept these challenges as my new normal and learning to celebrate the small victories. 
• Large, social situations, while always something overwhelming for me before, have become that much harder due to my hearing loss. I have a hard time following conversations and engaging and by the end of the "party" I am exhausted from working so hard to focus. 
• Ironically, research, specifically data processing, is one of my triggers for my wonky head. This has been a hard adjustment because it is something I need to do as part of my PhD, but really takes a lot out of me.

What I am Thankful For

• I feel so incredibly blessed that I had no facial weakness. I have met so many AN patients through my support group that have experienced this complication. I don't know why I was so blessed, but I am incredibly thankful. 
• Sleep is absolutely amazing with my single-sided deafness! I just sleep with my good ear down, put my deaf ear up, and it is like nothing else exists in the world!
• I am so incredibly thankful for the amazing team of surgeons, therapists, and support at the USC Acoustic Neuroma Center. Treatment at this facility essentially feel into my lap and people from all over the country come to get treated by this time. I really was so blessed by my experiences.
• I am thankful for the small victories. While at times I get frustrated when things get hard, I had learned to find joy in the things I loved that we routine. I celebrated after my first bike ride, I celebrate after a successful hike. I get to celebrate the ordinary!

What I Learned

• I can no longer cry out of my left eye. Apparently the surgery affects the tear ducts...and yes I found this out during a breakdown, which was scary, but funny all at the same time. 
• I have witnessed the importance of PT. Inpatient and Outpatient PT was part of my treatment plan and it is amazing what it has done for me. I can't imagine my recovery process without my therapists!
• I really have been given a whole new perspective on life. When you go through a "health scare" it really shows you what is important in life. 
• While I have always known it, I learned how truly amazing my husband is. I cannot even imagine going through all of this without him. 
• I learned to fully trust God. If you know me, I am a worrier. My life verse is "Cast all your anxiety on Him for He cares for you." I have always struggled with letting go and letting God and I can honestly say this experience was the first time in my life that I was not "worried." Yes, I was scared, but it was different. I truly just let if go and believed God would care for me. 

What I Fear

• Not being able to hear my baby cry in the middle of the night. 
• Not knowing where my child is at when they cry for help. When you only have one functioning ear, you can't isolate where noise comes from. 
• Losing my hearing in my other ear and not being able to hear the voices of my loved ones. 

What I Look Forward To

• Continued growth as I adapt to my new normal
• Trying new/old things as I continue to recover
• I truly believe that God does not give you more than you can handle. I also believe He uses all things for His good. I look forward to using my experiences to help others. I think I had this tumor for a reason and that I need to use these experiences to give back and support others. 

The Power of Hardship

For my own personal "therapy," I have been wanting to write again, but I wasn't sure what to write about. But in the past couple weeks, struggle and hardship and how to deal has come to the forefront. I have been pretty stressed for the past couple months. I am at a stage in my PhD where there is little wiggle room and as a result my life has been hectic. As part of the PhD process we go through Qualifying Exams, a two part exam process that advances us to candidacy which is a fancy way of saying...go forward with your research ideas, get them done, and graduate. USC is a little different from other universities in that the first part of our exams is a week long exam where we get a new question each morning that must be completed within 9 hours and turned in at the end of the day. We have four questions over a five day period. Once notified you have passed that portion of the exam, you have 60 days to complete your dissertation proposal. This consists of a 30 page document proposing your research ideas and an oral presentation (up to 3 hours with questions). This is the stage I am at now and needless to say I feel the pressure. 

Being in this stage of your academic career takes a lot of discipline and personal sacrifice (both on my end and my family's/friends' end). Trying to balance family life and progress becomes very challenging, and honestly I have struggled with this challenge. There have been days I just break down crying wondering what I am doing because the "To Do List" only seems to grow and I can't fathom how to tackle it. However, I am not writing this to complain about school, it is all something we have to learn to deal with and how to manage. But I have learned something else about myself in this process....I need to learn to cut myself some slack and to learn to heal. 

A little over 8 months ago I had surgery to remove my Acoustic Neuroma. Following surgery, I was already back to working from home. I needed to finish a presentation that my advisor would be presenting on my behalf. I was also working to make sure that things were going smoothly with my first two subjects in my golf intervention. Six weeks after my brain surgery, I was back to the grind at work and hit the ground running. I was supposed to take my Qualifying Exams early in that semester and brain surgery threw me back. I felt behind and I was doing all I could to catch up. I didn't think anything of it. I didn't feel great but I could manage. And I felt it was important to not let this experience set me back. I have opened up about this before, but I felt blessed that my tumor was benign and all I had to go through was surgery. I had been given a unique perspective on life. I watched my best friend go through so much as she battled cancer and she was so brave through all of it! Within months, my health scare was resolved. Yes, I have residual symptoms, but they aren't that bad in the whole scheme of life. I am thankful that I was able to have such an "easy" health issue. But what I failed to acknowledge was that I still NEEDED to heal. It was almost like I downplayed it too much and as a result I didn't deal with feelings of fear and frustration in my healing process. I see people around me going through so much and I respect them so much for the bravery they show in facing their challenges. My health challenges couldn't even compare to theirs. But to discount your own fears, struggles, etc isn't necessarily the way to cope. You can give thanks, but still be afraid. You can praise God, but still want to cry about the struggles you face. And just because your struggles are small in comparison in others, it is still OK to acknowledge the challenges. We each have our stuff we deal with and what affects one person may not affect another, but that doesn't discount how you feel about everything. It is important to acknowledge how you feel and allow yourself to heal. I am now realizing that I just went back to work and never gave myself a chance to heal. I went through something scary and I am still dealing with permanent side effects of the surgery and tumor. I won't ever be my pre-tumor self and that is OK, I am OK with that, but I need to know it is OK to cry and feel sad and break down. I crammed to get work done before surgery and was working up until the afternoon before, continued to work from home after surgery, and then went back to work as soon as I could drive. I didn't cut myself any slack and now I am realizing that I never really acknowledged what I went through. I think what has made it harder is once I was back to walking normal, you couldn't really tell I even had surgery. Sure part of my head was shaved, but that's actually trendy now. So in turn, when I returned to work, it was like I was normal. But I didn't feel normal. I would get dizzy frequently, I still get dizzy when doing certain work related tasks. I get tired in large groups because it takes so much energy just to follow a conversation. At the end of my day, I am tired. It takes a lot to focus. And there are days when I feel worse than others and can't explain why I feel so out of it. But even though I don't feel great, I haven't stood up for myself. I talk to my hubby and family, but when I'm asked to do something and I don't feel great, I don't speak up, I just do it. I have not taken care of myself and I have not been my own advocate. So how did I get here? I coped by downplaying it all and while I thought I was good, I know I am still learning to deal. 

So why share this? I think we live in a society where we compare our struggles to the terrible things around us. Yeah I had a bad day at work but at least I have food on the table. Yeah, I am am feeling really crummy this weak, but at least I have access to health care. And yes, it is important to have that perspective on life, but I think all too often because we know someone that is sicker, facing more hardship, or hurting more we convince ourselves that our problem isn't that bad and we don't learn to cope and face our own struggles. We need to learn to cry, to hurt, to struggle, to be human. We don't always have to be brave. We don't always have to be happy. We can be scared, doubtful, and confused. That is how we heal! And it is through these struggles that we can grow. It is through these hardships that we learn who we are. And it is through these challenges that we learn to rely on others and our Faith. In this past year, I have grown so incredibly much in my faith. I have learned to trust Him and when I break down, I know He is there. Every Sunday leading up to surgery I cried at church. I knew I could trust in Him, but just because I trusted doesn't mean I wasn't afraid. These past two Sundays, I have also cried in worship but it is because I know He knows my heart and He is there for me and even though life is hard, I am not alone. And when I have a rough day at work and I just need to pray or spend time with God, it is not that I am bothering Him with my "minor" problems, it is that I acknowledge I need Him in the center of my life and sometimes it takes hardship to learn that. Its easy to get by when things are good and think we can do it on our own, but when things get hard, we are made aware we aren't that tough and we can't go at it alone, we need Him and we need love. So while these past 8 months have been challenging and I know I still need to heal, I realize that this can only be done by trusting in Him and loving Him. I also know that is it OK to feel weak, like you can't do it on your own. It is OK to ask for help and that doesn't say anything about you giving the perception that your struggles are the most important, or that you lack independence or courage. And through this hurt and pain, we will learn, we will grow, and we will persist. 

Struggles of a PhD Student....Why doesn't anyone talk about it?

With the recent stabbing of a Psychology Professor at USC by a PhD student and the shooting of an Engineering Professor at UCLA by a former PhD student, so many thoughts have been running through my head. I am heartbroken to know that a professor was attacked by one of his own students. And it isn't just a student who sat in his class and was upset about a grade, it was a student who worked alongside him. As PhD students we work closely with our mentors, constantly meeting about projects, funding, etc. With this tragedy and the one last year at UCLA, I can't help but think about the mental health issues facing PhD students. I want to clarify that obviously I am not a mental health professional and this is by no means an attempt to justify the atrocious actions of the two aforementioned PhD students, but I do think the mental health issues facing PhD students isn't addressed enough.

I really started thinking about this topic when I came across an article online (http://qz.com/547641/theres-an-awful-cost-to-getting-a-phd-that-no-one-talks-about/). It talked about many of the mental health issues facing PhD students including depression (~47% of PhD students) and "imposter syndrome." It was then that I came in tune with some of my own feelings of self-doubt and just not feeling like myself. PhD students tend to be your Type A, neurotic, stress-case, overachieving personalities (generally speaking, not always the case). In order to get to your PhD, you have had to have prior successes in your academic career; therefore, you are typically the top 5%, if not higher. To get into a program, you often compete against other successful students for 1-2 spots. The first year I applied, I was rejected by two programs (USC and University of Oregon). I took it pretty hard at first, I had never "failed" in my academic career and now I wasn't "good enough" to get in. It took some time to accept, but when I look back now, I realize the timing wasn't right and I learned a lot from that rejection. I learned that it had nothing to do with my abilities and really it was who was the right fit that year.

Then you enter the culture of academia. And honestly, I don't think there is anything that could have prepared me for this culture. You have no idea what to expect until you get there. I remember interviewing at USC for my second go-around, and one of the professor's asked if I had any questions. I followed with "what qualities are necessary to succeed as a PhD student?" The answer was "be prepared to fail and she talked about resilience." You will write a grant proposal, it will be rejected. You will submit a manuscript, it will get rejected. Even the most brilliant of minds have faced rejection upon rejection. Yet despite the understanding that there will be rejections, there is still this pressure to succeed. As PhD students, we are trying to prove that we are worthy of entering this field. We are trying to prove our worth to ourselves, to our faculty, to our university and to our field in general. From this stems the feeling that we need to work and almost a feeling of guilt if we aren't working. I can't tell you how many times I have walked into my office on a Monday and I asked my lab mates how their weekend was and their answer is "I actually took a couple days off. I didn't work at all." The fact that this even has to be stated is at times mind blowing to me. And I was that person the first couple years of the program. I put the pressure on myself to always work. Work means progress, progress means potential success, and this potential success could lead to future success (a job once we graduate). And this pressure doesn't have to come from your advisors either. In fact, I have been so fortunate to work with faculty that actually check in with me and serve as role models to have a work life balance. When I was diagnosed with my Acoustic Neuroma, there was not one person who continually told me I needed to take care of my health and I needed to focus on myself. However, like I said I have been fortunate and I know there are some advisors out there that are not sympathetic to the fact the students are human beings and have needs outside of the program.

So if the pressure isn't coming from my advisor, where do my feelings of sadness, defeat, and at times a feeling I am a fraud come from? Like I mentioned earlier, part of it is just the culture of academia and us trying to make it. As PhD students, we need to produce quality research to get published. These publications will be important to apply for jobs as faculty members. No publications, no job opportunity. Therefore, there is this pressure that we are under in order to produce. And then you consider the competition. PhD programs are filled with brilliant minds, I mean absolutely brilliant. And being in this environment can induce feelings of self-doubt. Throughout my career, I was always the top of my class. However, I believe that it came from hard work. Yes, I have a gift (and passion) for learning, but on the same respect, I was NEVER the person that could just sit and listen to a professor and then take the test without studying. I would spend hours upon hours studying. Just ask my roommates and my hubby. I think every picture of me hanging out with my roommates in our apartment had me with my textbooks (and that was undergrad). Super Bowl...textbooks, pumpkin carving...I would carve my pumpkin and then hit the books, watching TV....notes. Then I enter the PhD program and I am surrounded by similar individuals and then individuals that are just brilliant and hard working. You go from the top to the norm or maybe even the "worse" and it is a huge adjustment. Then, you are essentially competing with these brilliant individuals for a future job, it is very, very easy to feel like you don't belong. I have accepted this feeling and use it positively. I chose this path because if you know me, I don't want the easy path. I like being challenged, I like working hard. If it was easy I would be bored and hate my job. So it is ok that I feel challenged. I heard a great quote at an event honoring the great physicist, Richard Feynman. It said, "If you know what you are doing, get a new job." So yes, there are times that I still feel like I don't belong, but I have luckily developed the perspective that this struggle is OK and I stare at that quote and I know I am OK. And finally you consider your future and your observations of your advisor. You need to do quality research to get published. You need to get published to get grants. You need grants to do this research and in turn you need grants, research and publications to get tenure or even to get a portion of your salary. Yes, there are faculty jobs out there that REQUIRE you to earn 25% of your salary through grants by your 5th year of employment. So yes, there is a lot of pressure, A LOT OF PRESSURE. And yes this pressure can lead to mental health issues. But sadly, no one talks about it. I had no idea these issues existed when I was applying to a PhD. Yeah, I knew some friends who had a hard time adjusting, but they moved across the country to unfamiliar territory so I thought, oh they are just homesick. But now I realize that is more than that.

So how is this addressed? One, I think it can start with the students, at least that has helped keep me in check. I don't think the students talk about this enough. We are perfectionists by nature, so then to admit that we are struggling emotionally would be too much. I am so thankful for a close friend that was very, very open with me and would talk about visits to a counselor when he/she was going through some hard times. This openness made me realize that I was not alone in some of my feelings. Additionally, I learned from him/her. My friend would give advice of how he/she too would feel the need to always work and didn't take care of themselves as a person. We soon started scheduling regular fun outings just to experience life. And it was so good for our health! I think students also need to support each other, but I don't think this is always a possibility. I work in a large lab where I get to work with so many people, but I know there are some labs where you may be the only PhD student. I have developed some very close friendships where these people are here for me on my bad days and I am there for them on theirs. I also think that somehow the culture of academia needs to change and it may start with us. Take real lunch breaks, don't work at night, don't work on weekends, be a human being....and yes there will always be those times when we need to meet a deadline so there will be long hours, late nights and weekends of work, but this should NOT be the norm. Finally, I think there needs to be more of an awareness about this. I think a lot of times students don't realize they are facing mental health problems and just attribute it to stress. There is no awareness of it, there is no talking about it, so you just feel alone in your feelings. You also aren't in tuned enough to get help when you need it.

It breaks my heart that a student felt a need to kill his advisor. I can't even fathom it and I am so heartbroken for the professor's family. There shouldn't even be a thought that your loved one won't come home from a day at a University. I don't know his motive and there is absolutely no justification for his actions; but, I also think something needs to be done about the mental health of PhD students. Mental health issues in general need to be addressed in the general population and our culture of how we view them needs to change drastically. And then in these "jobs" that are plagued by mental health problems, steps need to be taken to address these concerns and provide the necessary support for those that need it.

All in Perfect Timing

It's been a while since my last blog and a series of events have inspired me to write again. Over the past 8 years, I have been experiencing hearing loss in my left ear. I first noticed it after a series of colds and it was like my ear never cleared up. Everything sounded muffled. When I started at Cal State Fullerton, my sport psych professor asked us to play telephone and the person whispered the phrase into my left ear. I couldn't understand what was said and I tried my best to pass on the correct phrase, but I of course butchered it. Despite this, I was too stubborn (or maybe too stupid) to go to the doctor. It continued to get worse though and I used the words "Huh?" and "Pardon?" a lot. I went to a doctor finally and they thought I had Eustachian tube dysfunction thus my sinuses weren't draining properly. This sounded reasonable as both my mom and sister had surgery for their narrowed sinuses. However, the meds that were given to me just made me feel sick and I was too lazy to follow up with an ENT. After a year at USC, I decided to go to the health center. They gave me a referral, but I found better things to do despite my husband's insistence that my hearing was worse than I thought and that I needed to go. Finally, Chris heard of something called an Acoustic Neuroma, a non-cancerous tumor that forms on your balance nerve in your skull. This tumor can put pressure on your hearing nerve and cause single-sided hearing loss. Looking this up, I realized that it fit my symptoms, but I still didn't go to the doctor. It was easier to not know if I had that....I know my logic was completely illogical, but it worked for me. However, after persistence from my husband I finally went and got another referral to get my hearing checked out, eight years later.

I went in for my hearing test at Keck USC and for the first time I was made aware exactly how poor my hearing in my left ear was. They put noise in my right ear and asked me to repeat back words said in my left ear. I got ZERO! While I could hear tones in that ear, I had zero speech discrimination and that meant I was considered deaf in my left ear. That was shocking to hear. Chris told me he wasn't surprised because while I thought I heard him on the first call of my name, he had really called my name 5 times prior and I just heard the final yell to get my attention....ooops. I then went to see my Otolaryngologist. She told me she wanted to order a MRI. Typically she would just order it without contrast and then if needed would order with contrast, but she told me she didn't want to waste my time and just ordered a MRI with and without contrast. I knew she thought I had an Acoustic Neuroma and now it was just a waiting game.

About a month later I received a call from my doctor and my feeling was confirmed. I had a 2 cm (about 1 inch) tumor on my balance nerve in my left ear. I was given two options: 1) Watch and wait or 2) Have it surgically removed. After a lengthy conversation with the doctor and talking with Chris and my family, we proceeded with option 2. I was young and the tumor was on the moderate and could become large with continued growth.  It was starting to touch my brainstem and if it grew more, it could eventually become life threatening.  I was told that my outcomes following surgery would be much better if I had surgery now as compared to later when my health could potentially worsen. My balance was excellent so following surgery I would have a better recovery. It seemed like a no brainer to go forth with the surgery. I kept my diagnosis pretty quiet, just didn't want the attention or to cause concern.  I acutally felt blessed, yes blessed, that this was my "major health scare." I watched Tory go through surgeries, and failed treatments, multiple hospital stays, and multiple health scares, but yet she remained so positive. I would only have to have one surgery and I could put it behind me and focus on recovery. Man, that seemed so easy compared to what other people deal with.

The blessings continued. Suspecting I had an Acoustic Neuroma, I had previously tried (before I was diagnosed) to get an appointment with the House Clinic in LA but they never called back. They were known for their surgical treatment of acoustic neuromas so I thought hey, might as well go there. However, I am so incredibly thankful they didn't call back...it was all in God's plan. Hours within being diagnosed at Keck USC, I received a call from Kris Siwek, the patient navigator at Keck USC Acoustic Neuroma Center. Years prior she was diagnosed with an Acoustic Neuroma and had it surgically removed by Dr. Friedman, who was now at Keck and would be on my surgical team. She let me share my story and she shared hers. She was so compassionate and caring and I immediately knew I was in good hands. Within days, she scheduled all my appointments to consult with Physical Therapists and the Neurosurgeons. She made it so easy! I also soon found out that I was going to be treated by the world leading University hospital in the surgical removal of Acoustic Neuromas and they literally fell into my lap. I only went for my hearing test there because it was across the street from my building I work in at school. I went their for convenience but soon found I was at the best place for what I had, that couldn't be a coincidence. So while I am totally embarrassed that I waited 8 years to see a doctor, I feel that it was meant to be that way....how else would I have ended up at USC?

I also knew the timing was perfect because I finally had a church family. Chris and I had been searching for a church pretty much since we were married and for a long period of our marriage, we were really only at church on holidays. About a year ago we tried out our roommate's church, Lakeside Church. We started attending regularly and were immediately welcomed into the church family. We were also given opportunities to become involved in the church as youth leaders, something Chris and I had been searching for. There is no way I could have had the courage to face this diagnosis if I didn't have God as the center in my life, but Chris and I trusted Him and I knew he wouldn't give me more than I could handle. I also knew that God had put me in a caregiver role for Tory to not only put perspective on my life during my time spent with her and to develop a once in a lifetime friendship with Tory, but  also to prepare me for this. The diagnosis didn't come across as unachievable feat, I watched a beautiful girl fight every day of her life for two years, I knew I could get through this little hill of my own. So while I should have gone to the doctor earlier, the timing was perfect. I grew into a person that could handle this and be trusting and faithful through it all. Not once did I have a "why me?" moment and I still don't. I was given something that was curable, how lucky is that? Yes, I was nervous about having brain surgery and the recovery after, but I knew I could rely on my amazing family, my faith, and my memories of Tory to get me through it....and that is exactly what I am doing.

On June 7th, I underwent brain surgery to remove the tumor. They went through my inner ear and removed my balance nerve so as a result, I am now completely deaf in my left ear and I am working to gain my balance back and control my dizziness. Luckily I work and go to school for the best Physical Therapy department in the nation so I am getting exceptional vestibular rehab. When I woke up in the hospital, I was so sick. Everything in the room would spin when I opened my eyes. It was terrible. I just had to lay there with my eyes closed. The next day I could at least open my eyes and all I frequently found myself reflecting on all the time I had spent in the hospital with Tory and Matt. With my amazing, loving, caring and selfless husband by my side and my memories with Tory, I knew I was in good hands and I might as well make the best of the hospital situation. While there were no parties like we had with Tory, I tried to keep a positive attitude. I was nervous about my first Physical Therapy appointment because I knew she would want me to walk and I wasn't even sure if I could sit up without getting sick. As I sat up, my PT told me to fixate on something and she held out her badge holder, which was a little owl. I then knew I could do this....you see Tory loved owls and whenever I see one I think of her. I knew at that time it was a sign that she was still with me and I could do it. Amazing how such a small thing can bring such peace, but it did. Thanks Tory for getting my butt out of bed that day.

Surgery was on Tuesday and I was home by Thursday afternoon.....oh so thankful and only one night with a roommate, boy did I win the lottery. I am still adjusting to the complete loss of hearing and the really weird feeling in my head but with each day I am getting stronger.

I wanted to write this blog not so people would feel sorry for me or to get attention for my diagnosis, but rather share that there is perfect timing for everything. I also think it is a great example of how God uses our hardships for good. While I would trade anything in the world for Tory to still be here and that she wouldn't have had to deal with what she did, I know God used my experiences with her to make me stronger. I went from caregiver to patient (on a much smaller scale). While I have no idea what Tory went through, I had a very small taste and I found peace in knowing that if Tory could handle hers, I could handle mine.  I was diagnosed with a brain tumor (like I said, thankfully non-cancerous) and had to go through treatment. I relied upon my faith and the knowledge that God was and will continue to be with me every step of the way, my family, and Tory's courage to know I could handle it. If I was diagnosed 8 years ago when my symptoms started, there is no way I would have had the maturity and grace to be ok. At that time I did not have the life experiences or perspective or faith to know I would be OK. God had perfect timing in all of it and for that I am thankful. So Tory, while you are not physically here, thank you. Thank you for showing what true bravery and courage looked like so I too could emulate those traits.

The Power of People

The beginning of the school year is always tough and not necessarily because of the hectic schedule, homework, and endless hours studying. For me, the beginning of the school year is tough because it stirs up a crazy mixture of emotions from just two years ago. In August 2013, I moved to LA to pursue my PhD in Biokinesiology at USC. I was excited and nervous about the move and the new program, but not prepared for what I had in store. I was getting a good nights rest after my second day in school when I received a phone call in the middle of the night/early morning. It was Matt, Tory's husband, calling me to let me know Tory was at St. Bernardines Hospital undergoing emergency brain surgery for bleeding that was putting pressure on her brain. At that moment, I remember the sense of pain and not knowing what to do. I had class the next day, but I been with Tory through every procedure up until that point. I called Trisha, one of my best friend's since middle school and someone who helped celebrate Tory Tuesdays. She helped me think clearly and realize that class wasn't until 1:00 PM, so the two of us could meet at the hospital and I would just leave at 12:00 PM the next day to get to class. Tory miraculously made it out of the surgery, but due to the damage that was suffered from the bleed, she would have to be in an induced coma to help the brain heal. We later found out that the damage was so great that her brain would likely never recover and Tory would suffer from permanent brain damage. Tory fought two hard weeks in the hospital and on September 11, Patriot's Day, Tory went home to our Father in Heaven. If you knew Tory, you knew what a perfect day that was for her, she was one proud American.

Reflecting on those crazy first two weeks of my PhD of sleeping in the hospital, saying goodbye to my friend every time I went into her room to see her not knowing when she would take her last breath, and many, many, many tears really brought forth some deep thoughts that inspired me to blog. You see, during those weeks, if you asked where was God in all of that, I don't think I would have been able to give you a good answer. I trusted him throughout the whole experience and knew there was a plan, I spent many hours praying, but honestly I couldn't say much more than that. In all reality, I don't think I would have been able to answer that question until recently. One of my cousin's best friends, Kyle Garlett, survived cancer multiple times and as a result of the chemo had a damaged heart and underwent a heart transplant. Since his transplant, he has competed at the Kona Ironman Championships, an impressive feat for a healthy individual. To share his story, Kyle wrote Heart of Iron: My Journey from Transplant Patient to Ironman Triathlete. I highly recommend this book to anyone who has been affected by cancer. It is by far one of THE most powerful books I have ever read. While I had been with Tory through so much of her treatment, Kyle's book really gave me insight on what it was like to be a cancer patient, I wish I had read it earlier so I could relate to Tory just a little more. In one of his chapters, Kyle shares a story of how he was told that God kept giving him cancer because of something he had done. Kyle, a Christian, luckily refused to believe this and in explaining why, he really helped me form the answer to the question.

Like Kyle, I refuse to believe that God gives people cancer nor does he choose to cure some people and not others. I refuse to believe that God chose not to cure Tory's cancer. So where does that leave us then? I still haven't answered the question. Where was God in Tory's cancer journey? Like I said, I knew he was there, but where? To quote Kyle: "God loves us, yet we suffer. God is with us, yet we feel alone. So how do we know that He does in fact love us? How do we know he is with us? Go and spend a day on a cancer ward at any hospital in the world, and you will see him. He's always present in the people." Finally it clicked.....God was in us and around us and I know for a fact this could not be more true!!!

So where was God in Tory's cancer journey from diagnosis to victory? I hope to use the rest of the blog to share where.

First and foremost, God was in TORY!!!! If you were able to spend some time with Tory during her diagnosis and treatment, you remember her smile and joy despite her circumstances. Don't get me wrong, Tory had her times where she felt beat up and broken, but overall, Tory made the best out of everything. We would have parties in chemo with laughter and joking, we celebrated holidays in the "penthouse suite" of the hospital, and celebrated life with Tory Tuesday. Tory lifted my spirits and I needed her as much as she needed me.

Tory on her white water rafting trip with Matt

God was in Matt, Tory's husband. The most beautiful display of love that I have observed was the day of Tory's mastectomy. I came into the room to find Matt holding Tory's hand and telling her how much he loved her before she woke up from the anesthesia. Matt would work until 10/11 PM, come home from work, wake up in the morning to be by his beautiful wife's side, and then would drive her to appointments, sit by her side, and when all was done, go back to work again. Matt selflessly gave up his life to support Tory and the most amazing thing was that Matt never once complained. He did it not because he had to, but because he loved Tory with all his heart and soul and he made a promise to her in September of 2007 to love her in sickness and in health. God shined through Matt daily!

God was in Tory's parents and brothers who loved her with all of their hearts. Tory's last night before the hospital was spent watching a movie filmed in the mountains with her parents. They had such a wonderful night as a family and I know they cherish this memory. They continue to share Tory's spirit with Rim graduates through a scholarship for a Auto Shop student, one of Tory's passion. Her story will continued to be shared through her parents for generations to come.

Tory with her dad at the Susan G Komen Walk

God was in the doctors, nurses and volunteers at Loma Linda and St. Bernardines. During chemo, every single nurse would come and chit chat with Tory, share awesome stories (like Drive Up Bars in Louisiana, tell me how that works), and just take some time to give her a hug and show they cared. The doctors would cry when they had to tell Tory her cancer had spread. The amazing volunteer snack lady would sneak Tory, Matt, and I extra cookies and treats and after a couple treatments, even remembered what treats we preferred. And when Tory was in the coma, the rules of visiting no longer applied. They allowed us to take over the waiting and did not cap how many people could be in with Tory at any given time. They poured their heart and soul into making sure Tory was as comfortable as was physically possible. They had just met her, but they cared for her like she was a long time patient.

God was present in Tory's Angiosarcoma family who served as a support group for her. They were the only people that could truly understand what it would be like to be diagnosed and live with such a rare cancer and they were able to provide comfort and understanding where she needed it most. The night before Tory passed, Angiosarcoma Awareness announced that a grant would be given in Tory's name to a research institute to research Angiosarcoma. The moment I saw this, I cried......Tory's mission was to spread awareness of Angiosarcoma in hope of a greater understanding of a disease and this grant would allow just that. When Tory passed, her family reached out to Matt and myself. Here they had struggles of their own, but still wanted to be there to support the extended family.

Raising money for Angiosarcoma Research at Cycle for Survial

God was present within the mountain community. As kids, growing up in a small town could be difficult. Everyone definitely knows your business. But when it all comes down, the mountain community will always protect its own. And if a local is in need, people will come to support as they can. When Tory began chemo, expenses were adding up so a group of us decided to hold a fundraiser in the form of the spaghetti dinner. Bev Brown was graciously the brains of the operation and put in so much work to help organize. We had an abundance of family, friends, and mountain businesses join together to donate all the food and supplies for the dinner, donate items for the silent auction, and donate time to work at the event. On top of that, the mountain community came out to support. People Tory had graduated came from out of town to attend the event. I had friends who had never met Tory come to support because they knew what a special person she was. In total, we raised $10,000 for Matt and Tory that night. Coincidence that the event was held in a church.....I think not.

God was in the amazing hairdresser at Fantastic Sam's who shaved Tory's hair when she started a new round of chemo. This girl could have easily been freaked out and been awkward when Tory came in saying, I need my head shaved and then when asked why, proceeded to explain she had cancer. Rather than cutting her hair in silence, this beautiful woman asked Tory questions, laughed and joked with her, and made it enjoyable. It was so amazing, Tory went back and requested her when she needed another shave, and she was instantly greeted with a hug and a smile. A total stranger took the time to learn about Tory and care for her. She did more than shave Tory's head, she had an impact on our lives.

God was in Tory's chemo angels, complete strangers who would send Tory weekly cards and gifts. It was like being a pen pal, except as a chemo angel, you are not to expect to receive anything in return. Tory of course reached out to her angels and developed friendships with these angels. One particular angel, Kim, made a lasting impact on Tory. Kim was so inspired by Tory, she took up lifestyle changes to improve her health and life satisfaction and shared this with Tory. Tory has always cared so much for other people and when she learned that she had an impact on Kim, she was able to feel normal. Tory felt like she had purpose and Tory would always share stories about Kim and how proud she was.

God was in Brent and Dawn, a couple that Matt and Tory met at the Stupid Cancer Expo in Las Vegas. Dawn and Tory instantly became friends as did Matt and Brent. The first thing I heard about when Matt and Tory returned from Vegas was about how amazing Dawn and Brent were and how special it was to meet two people that understood what they were going through. They provided laughter and understanding.

God was in Kim Fares, a young breast cancer patient that met Tory at a breast cancer support group for young women. Kim was from Big Bear and the first person Tory met that had stage 4 cancer and was her age. Previous support group meetings consisted of older people that Tory of course had a hard time relating too. They had lived their lives, had families, worked careers, celebrated numerous anniversaries. How was Tory to cope with being a young cancer patient? Kim was the first person that Tory could relate to and she provided that comfort for Tory. When her friend's held a fundraiser for her treatments, she made sure to save two "Save 2nd Base" trucker hats for Tory and I to wear proudly. Kim also drove from San Diego, by herself, despite being recently told that she needed to start treatment for brain cancer, to celebrate Tory's life at her memorial services.

God was present in Boarding for Breast Cancer who gave Tory's cancer a purpose. They embraced her with open arms and were so happy to have us volunteer at the X-Games while we taught women about early detection and how to perform breast self exams. It didn't matter if they were executive board members or people on the front lines of outreach, they made a point to meet Tory and thank her her for sharing her story. They also let Tory tell her story on YouTube in Tory's "It's Personal." I personally hold onto this video because I can see her beautiful smile and hear her laugh. During X-Games 2013, just as Tory and I were leaving, they ran after us to give us two passes to the Motocross event that night at Staples Center. This was Tory and my last big Tory Tuesday and this memory is one that I will always hold onto and cherish forever. Writing about it now brings tears to my eyes because I am so eternally grateful to them for giving me that final memory. God continues to be present in B4BC as they continue to share Tory's story with others and embrace me with open arms when I volunteer to help educate others.

Blaire of B4BC and I at Shred The Love

Caring the flag during the tribute ride in memory of Tory

Our last Tory Tuesday

God was present in the class of 2013, who, when celebrating our 10 year reunion, were so genuinely concerned about Tory's health (she was in the coma and missed the reunion she worked so hard to plan). Some even made sure to visit her in the hospital before they returned home. Part of the money from the reunion was donated as a scholarship in memory of Tory. This went to a senior in the class of 2013 that was affected by cancer in some way. Once again, the mountains came together to care for their own.

At the class of 2013 reunion thinking about our girl

The recipient of the Class of 2013 Tory Brumm Ward Memorial Scholarship

God was in the Irving's, who were such a huge support system for Tory, Matt, and in all honesty, myself as well. Sparky sat with Matt when Tory went in for her mastectomy. She also encouraged me to visit that night on my way home from school. I was going to give them space, but she told me to go. Her encouragement is why I had the fortunate opportunity to be by Matt and Tory's side through it all. It was that night that forever changed my life. The next day was Matt and Tory's anniversary so Sparky and I drove around picking up flowers, decorations, balloons (FYI hospitals won't let you bring those in, sorry birds), and of course cake. Sparky, being the amazing party hostess she is, organized it all, and it was amazing. Sparky and Dean would have Tory and Matt over for dinner, invite them on vacations to Newport, and held an Anniversary Party at their house for Tory and Matt. They were all around true friends. C, Sparky and Dean's daughter, was equally as special. She became a little sister to Matt, Tory, and myself, and brought the joy of a child when they needed it most. C, with Tory's help and influence, wrote about her made up country Redneckastan, which sounded quite amazing. She would write about how she was going to become a doctor to cure cancer because of her friend Tory. She was a young girl, but had the maturity of an adult. When Tory was hospitalized, Sparky and Dean always opened their house to Matt and gave him a place to stay since their home was closer to the hospital than Matt's. Sparky was able to sit by Tory's side during her last chemo treatment and the two of them were able to have a real conversation that I know finally brought some peace to Tory.  And when Tory was in her coma, Sparky spent her own birthday in the waiting room with me to just be able to spend one more night with Tory. This family is one of the most amazing and loving families that I have ever met.

C and I representing the Pink Ribbon Rednecks at the Believe Walk

Celebrating Matt and Tory's Anniversary at the Irvings

God was in the Pink Posse. The Pink Posse is a group of Tory's friends from childhood. Tory, Kim, Aerielle, Stephie, Jessicah, Trisha, Brie, and Molly all became friends in elementary school. I was the late add and became friends with most of them in middle school. While we had all stayed friends over the years, it wasn't until Tory's diagnosis that we really developed a once in a lifetime friendship. These girls brought so much joy to Tory during her treatments and journey. They threw birthday parties (one of which occurred during chemo treatment), a hat party when Tory started chemo so she would look fabulous when she lost her hair, and talked to her daily. They even made videos to cheer Tory up. These girls are the most amazing group of girls and they made those past two years amazing for Tory. They would always thank me for going to appointments with Tory. They were all spread out and didn't have the flexibility I had to go see her. So in my mind, I was simply the representative, but everything I did, was really what the group did and was a reflection of the love of this group of girls.

Hat Party!!!!

Pink Posse at the Believe Walk in Memory of Tory

For me personally, God was in the people who helped support me so I could be there for Matt and Tory. God was in my family who was there for me to laugh and cry with. They would listen to my stories, comfort me when I needed peace, and lift me up when I needed strength. When Tory had brain surgery, my sister took off work, drove down from Yosemite, and spent the weekend by my side in the hospital with me. God was in my husband who ate dinner alone many nights because I was celebrating Tory Tuesday. He was and will always be my strength. Rather than getting frustrated by my absence, he supported it.  He knew it was important to me, so it was important to him. God was in Trisha, who made Tory Tuesdays that much better. She came up with amazing outings and shared even better stories. You can't help but laugh when you are with Trisha and while we had a strong relationship before, we have an even stronger one now. Trisha was the person I knew I could call in the middle of the night when we got bad news. She was the one who drove out to the hospital to sit in the waiting room with me when Tory was having brain surgery. And even when Tory was in a coma, there was still joy in the time we spent with Tory as we read Stephen Colbert and Trisha shared stories of dating. It's crazy to think that I actually have good memories from the hospital, but I do because of Trisha and the spirit she brings to the room. I know Tory appreciated it. God was in my Fullerton family who were so supportive. My friends would check in on me and Tory, even though they had never met Tory. They let me share stories and would just listen to me talk. One particular friend, Sean April, had a special role in my experiences. I first met Sean through my advisor. I knew we would become friends because he was a hardcore snowboarder, but we were able to relate to each other on a deeper level. Just a couple months before Tory was diagnosed, Sean's dad was diagnosed with Pancreatic Cancer. I know I at least found peace in talking to someone who was experiencing something similar to what I was experiencing. Sean would always ask about Tory and I would ask about his dad. This continued for two years, until Sean's dad passed away a couple months before Tory. While I will never understand what Sean felt, he was a true blessing in my life. Another blessing was Dixi. She had recently lost a friend to cancer and reached out to me when she heard I was helping Tory. Dixi helped care for her friend as I had been doing for Tory and having the wisdom and encouragement from someone who had lived it was amazing. Dixi would take the time to check on me and help lift me up, so I could lift up Tory. Finally, God was in the Yosemites. My sister was living and working in Yosemite at the time of Tory's passing. Kari immediately volunteered to make the ribbons. So her, and her fellow Yosemites, all of which had never met Tory, and some of which never met me, sat and glued hundreds of Pink and Yellow ribbons. What an amazing sign of God's love and presence.

Color Me Mine with Trisha and Tory

Our Knight Won!!!!

Trish sporting the Pink and Yellow for Tory after a long day in the waiting room

Kari and I at the Susan G. Komen Walk with Tory

I know this blog is long, but I felt compelled to write it. It is not only a revelation of God's presence in Tory's journey, but also a thank you. I know there are many instances of God's love through it all that I have forgotten and I know many people as well. Friends and family that sat in waiting rooms, slept in waiting rooms, made meals, checked in on Matt and Tory, donated money, and provided emotional support and release. All of this acts of selflessness, love, and compassion are evidence that God was with Tory through it all. Never once did he leave her side. While I still can't answer why Tory got cancer or why she was victorious through death, I know God was in Tory and with Tory every single step of the way.

Tory Tuesdays

I was getting ready for work the other morning when Tim McGraw's song, "Live you like are dying" came on. I have heard this song a million times and sang the words, but the lyrics never really sank in. However, for whatever reason, that particular morning I realized what the song was trying to portray. As I prepared to sit down to write this blog, a million thoughts rushed through my mind and I became somewhat sad....why does it take us being told we have a limited time to live that we choose to live? I always thought I balanced work, school, family and life pretty well, but honestly until I witnessed and walked alongside Tory, I didn't realize how out of balance my life was. I had this opportunity to pursue a "second chance" at life and for that I have Tory and her beautiful spirit to thank.

Matt, Tory's husband, worked for FedEx and worked a late afternoon to evening shift. When Tory got home from her mastectomy, Matt was able to spend the day with her, but wanted to make sure she wasn't home alone at night. This worked perfect for me, I had work and school during the day, but I could come by in the evening. At the time I was teaching at Cal State Fullerton and working as a research assistant. I was also working on obtaining my MS in Kinesiology. If you know me, you know I am a little bit of an overachiever and have a tendency to do whatever it takes to do the best job I can and that includes studying most hours of the day. So, at least during the week, I tended to prioritize school in order to make sure I was best representing myself in the classroom. Well, my opportunity to go and watch movies and hang out with Tory was the biggest blessing I could have ever received! Tory taught me to stop, slow down and just enjoy life! Your life could be totally turned upside down in a split second, so why not live life to fullest now? Tory and I would reminisce, I would cook her dinner (a big accomplishment for me at the time, wasn't much of a cook) and we would just sit, laugh and watch movies. It was like the world stood still and all that mattered was our time together.

Tory's radiation appointments soon began. I made sure to attend her first appointment, thanks Dr. Noffal for letting me miss Biomechanics that day. I was impressed....it was like the Ritz Carlton in the waiting room. They had boiled water on tap (don't ask me how) for Hot Coco. I think the Ritz Carlton may be insulted that all it takes is hot water to make it "classy" but it is what it is. Well, I soon made a habit of attending appointments once a week and if there wasn't an appointment, I would visit Tory at least once a week. Because Matt had to work in the evenings, I would take Tory home from the hospital and I decided, why take Tory straight home...let's go on an adventure. This become fondly known as Tory Tuesdays and we had a Tory Tuesday almost every single week for the two years that Tory was on her cancer journey. Tory and I would go to the mall, go to dinner, get mani/pedis or watch a movie. Tory would sit and thank me for what I was doing for her, but what she didn't ever realize was what she was doing for me. There I was, midweek, doing something fun! Tory taught me to live, to laugh and to just enjoy life. Tory "forced" me to slow down and say no and people can attest to that, I didn't say no. Shoot, my old boss actually sent me to a "how to say, no" seminar just because he saw I wouldn't. People knew that if it was Tuesday I was going to see Tory and that was priority number 1. Well soon Trisha enjoyed in our adventures and let me tell you, they became that much better. We went to Medieval Times, sporting events, Color Me Mine, Rainforest Cafe and numerous others. Trisha and I would strategically plan our adventure for that week..Trisha I know I thanked you then, but THANK YOU! You brought so much joy to our weekly outings and I now have so many memories to reflect on. We truly made those two years count!!!!

Medieval Times 

Save Second Base!

I think living like you are dying extends beyond adventures, it is just your outlook and Tory had such a wonderful one at that. Tory spent a wedding anniversary, a birthday and the Super Bowl among many other days in the hospital. But what was amazing is that she, Matt and myself have positive memories from those days. When Tory was hospitalized, it was often on an upper level so we called it the "penthouse suite." The nurses LOVED Tory and Matt and I reaped the benefits. Loma Linda is a 7th Day Adventist Hospital so that means...no caffeine but not when you have nurses that love you... that means coffee from the nurses station. Every chemo appointment turned into a party and every single nurse would be hanging out in our corner just because Tory was filled with so much joy. The nurses would tell stories, just say hi and the snack lady would always sneak us extra snacks. Tory was the center of attention and not because she demanded it, but it made everybody's day that much better by just getting a "hello" and a smile from such a beautiful human being. Tory would joke, laugh and never felt sorry for herself. She was also an incredibly good sport about her situation. Tory was a little sensitive to the Benadryl that they gave her before treatment and by a little sensitive I mean, a lot. You could always tell when she had it because she would start scrambling, slurring and making up words, doze off mid-sentence and when finally asleep would do this crazy thing with her hands because of the neuropathy from the chemo. Matt and I would just sit and crack up...I know we sound like complete jerks. But the thing is, we would tell Tory what happened and she would just burst out laughing at herself. It was unbelievable, here she was getting chemicals injected into her body that caused these horrible side effects and she would laugh! Man I miss that smile and laugh. Well of course, her positive attitude didn't stop there. Tory started to lose her hair and decided she wanted to shave it before chemo took it from her....so she went to Salon Du Bois, which means her house+Mojitos+Me+Clippers. Yes, Tory let ME shave her head. But we couldn't just shave her head, it had to be something fun. So first there was a mullet that progressed to a mohawk that ended up with the numbers 48 and 5 being shaved into her head. Tory was a NASCAR fan and Jimmie Johnson was her man, so number 48 was a natural and Matt's favorite driver went on the other side. That night was a blast and somehow we were able to turn something so devastating into a great memory....that's how you live like you are dying. Well Tory wrote Jimmie Johnson and sent a picture of her shaved head and her moment of fashion greatness paid off, Jimmie Johnson sent a card with a signed autograph. It was amazing!!!!

Welcome to Salon Du Bois

Business in the Front, Party in the Back

Jimmie Johnson!

I know this blog is very long, but this whole topic brings back so many memories of my friend. Tory would have been turning 30 this week and it breaks my heart that she isn't here to celebrate. I miss this girl who had such a joy for life more than I could even express. She could brighten the room in the most extraordinary way. Like I said before Tory would always thank me, but really the thanks is all mine. I got to spend the most quality time with one of the most amazing human beings. I was given the rare chance to see life from a different perspective and had a slap me back to reality moment. I was given a second chance on life! And even now that I am pursuing my PhD, I know I have a tendency to get wrapped up in my "To Do" list, but then I think about Tory and do what I can to just slow down and live life.

Before I end this entry, I want to share one final story of Tory. Tory received an opportunity to go white water rafting on a trip called Raft 4 Life. This trip raises funds for Angiosarcoma research but is also designed for individuals currently on their cancer journeys. So, to keep them safe, they have medical personnel on site. Tory decided to go on this trip. She loved the outdoors and because of the extra medical personnel, she felt safe. On this trip, due to the drought, the river was more rough than usual, but that didn't scare Tory, it excited her. She was supposed to go in the "easy" boat, but she wasn't going to wimp out, if she was going rafting, she was going rafting. So Tory sat in the front seat next to her loving husband as they tackled Class 4 rapids and her smile stretched from ear to ear. Tory got back from the trip on Monday, had a chemo appointment Tuesday and fell into a coma late Tuesday night. That was the last adventure Tory did and for that, I am so happy! Some may think the trip was too much for her body to handle, I think it was exactly what her body needed. Tory was sicker than she let any of us let onto, myself included, but Tory needed to live! It is so easy to get caught up in doctor's appointments, chemo, and what you should/should not do for your health, but the bottom line is, what is life if we don't live? I was watching CSI Miami and surprisingly one of the most inspiring quotes came from the show. One of the characters had cancer and  said, "I was trying so hard not to die, I forgot to live." Tory could have easily said no to the trip, but Tory chose to live! This idea doesn't apply to terminal illnesses, it applies to life. Don't be afraid to roll the dice, to take chances and to pursue life. We weren't put on this earth to go through the motions and to become mindless, working robots. We were given this earth as a gift from God, why waste it? Life is a miracle, show gratitude by living. In the words of Tim McGraw, "I hope you get a chance to live like you were dying."

Happy Birthday Tory! I know it isn't until Saturday, but I love you and I miss you daily. Thank you for being my continual inspiration and feel free to kick me in the behind when I need a reminder to live.