PTSD & Survivor's Guilt: My Worst Nightmare

I have incredibly vivid dreams. The Friday night before my mom died (the night after Thanksgiving, 2010) I had a dream that I was sitting by her bed in the hospice center. She was in her comatose state and I took her hand and laid it on my thigh, keeping my hand on top. Then she started breathing quickly, showing that she was in pain. I screamed for the nurse to come, but the nurse didn't come. I kept yelling and yelling but before anyone came she just stopped breathing. She had died in pain. And I couldn't stop it.

That Sunday night she was still alive and I left the hospice center near midnight. Before leaving, I asked the nurse whether she thought my mom would die the next morning. I was supposed to meet with some radiation oncologists from the Bethesda Naval Hospital and I had my heart set on becoming a doctor with the Navy at the time (this was before I realized the difficult of joining as I have exercise-induced asthma). My mom had been in hospice for a month now teetering on the edge and I had been pulling quite short work weeks. And not just for the last month had I been unreliable at work, but since she had been hospitalized with her final seizure on the 19th of October (two days after my birthday). And really for the last 10 months it had seemed like she could die at any second and it was scary, so scary, to go to work because what if I missed her last breath? The nurse told me that my mom would choose how she died and with whom she died. I should go to work with a clean conscience and just come back as early as possible the next day.

As I drove into work that day I called my dad and asked him how is mom doing, how is her breathing? He said she was fine. She had been breathing quickly about two minutes ago, but he had grabbed Barry (my favorite nurse, he had been deployed with the army several times), and Barry had given her morphine and she was breathing normally again. I hung up the phone. On the radio, Michael Franti's song "Say hey (I love you)" was playing, strangely enough because that was the only time I have heard it on the radio. My dad called back a minute later and I dropped the phone because I knew what it meant. When I pulled over and called him back he said that after he got off the phone with me, while he was watching my mom, she stopped breathing, and she was dead. Just like how I had dreamed, but she had gotten the morphine and was not in pain. I take comfort that she spoke to me through the song and she is still with me, especially when I am dancing, as we took dance lessons together for about 5 years :) I would highly recommend watching the video.

I had a dream last night that my sister had a stroke and that I did not see the warning signs. That she was in the hospital and it was so much worse because I had not adequately studied to identify her symptoms. It is difficult to be in school when I made a promise on my mother's grave that I would help others in her honor and that I would never out of laziness miss a diagnosis. It makes it difficult to have friends and hang out or relax. But I am working at it. While I may not be ready for big parties, I am slowly making friends both in school and out and sometimes I can open up with them and joke around again. This is real progress. I know my mom would want me to be happy and have friends, but the implications of not studying scare me. A LOT. But baby steps.


Side note. I met with the men at the Naval hospital that Friday instead and had a blast. It was fascinating and exciting. They were mildly impressed for some reason when I said sorry I cancelled, but my mom died Monday morning. And then moved on with the conversation.

EGCG/green tea, Prevention of Encephalopathy, and Alzheimer's Disease in Down's Syndrome

I had my first concussion in second grade. I was playing soccer in the beehive league (where all the girls run after the ball like a hive of bees). For that quarter of the game I had been stuck as goalie. So I was staring off into space when all of a sudden this girl who had been held back a year or two in school (much bigger than the rest of us) had a breakaway and kicked the ball really hard at the goal, smacking me in the head and knocking me out. I remember later asking my dad if he thought that the other girls would have stopped the goal....

Since then I have had several other concussions including once hitting my head very hard against the pavement after falling off my bike while going too fast and not wearing a helmet. Hence, when I hear about chronic traumatic encephalopathy (CTE), it scares the living daylights out of me. And there has been increasing amounts of evidence regarding its profound effects including the latest published research on Junior Seau who shot himself last year. There is further evidence that even veterans exposed to roadside bombs have CTE. Here is a nice picture show of brains of athletes with CTE: http://www.nytimes.com/interactive/2012/12/03/sports/images-of-brain-injuries-in-athletes.html?ref=sports

What can I do about it? It is difficult to say because the current literature doesn't say very much regarding successful interventions. Therefore, instead of relying on statistically significant interventions in the general population, there are a few things that I am trying out based on my knowledge and logic. These include preventing chronic hypertension and atherosclerosis from my endogenously high cholesterol (which compromises the brain vasculature and architecture), exercising regularly (which increases neurogenesis, or the birth of new neurons in the brain), taking fatty acids like Omega-3s, and drinking green tea.

Why green tea? Well, I am just so glad you asked! First of all, tau is being found in the brains of people with alzheimer's disease along with traumatic encephalopathy. Chronic traumatic encephalopathy further includes compromised vasculature. The flavonols in green tea are potent antioxidants that may limit the build up of oxidative damage throughout the cells. These means no oxidants to further compromise the integrity of my vasculature, my neurons (main thinking cells), or my glial cells (support cells whose function is just as important as that of the glial cells). For this purpose I also take omega-3s and phosphatidyl serine, but that is another post.

An interesting model of Alzheimer's disease (AD) is in Down Syndrome (DS) where behavioral evidence of AD begins in the 40s and 50s. According to our teacher, who is a medical pathologist and identifies causes of death for a living, ~100% of DS patients she has autopsied have neurological evidence of AD by the age of 50. It is not uncommon to see evidence of AD as early as thirty. This early onset AD is thought to be at least partially, if not fully, due to the increased expression/concentration/activity of a protein (Dyrk1a) that modulates the activity of many many other proteins including ones responsible for brain development and ones responsible for homocysteine levels. Dyrk1a is thought responsible for the increased risk of leukemia in children with DS along with a decreased risk for solid tumors in adults with DS.

EGCG from green tea has been shown to lower the levels of Dyrk1a in lab animals that have the genetic mutations of DS (trisomy21). These animals have neither the biological changes of AD on autopsy nor the behavioral/reduced mental functioning of AD in memory and behavioral tests. There are currently ongoing medical trials looking at whether EGCG could make a similar improvement in humans. But I say who cares, the evidence is adequate and the treatment (drinking a cup of green tea a day) adequately benign that why wait and see what happens to the average person with DS to see whether it will help me? Drinking green tea is much better than the alternative, which is reading about the problems that all these people are having from brain damage and doing almost nothing.


Oh, and GOOOO RENEE HIGH who is running in Disney marathon right now (1/13/2013 Sunday morning at 8am)! She won last year and we are looking for a good solid run this year! YAYYYY Renee!

An update: Not going to do surgery

Going into the second surgical consult, I knew that I needed to make a decision between running and medical school. Basically, the first surgeon told me I would need to take two weeks off of school. I don't think I would need this much recovery time, but during the second semester of my second year of medical school to do surgery with that possibility would be VERY risky. So my heart was breaking. I further discussed this decision with the dean, who had a similar opinion. I was guaranteed that the school would support me as best they could academically, but with the number of exams and all the information, to have surgery on Martin Luther King weekend would be very risky.

I entered the second consult with the plea that we need to find any and every non-surgical options. The second consult said that I *may* get by without surgery IF I find the best physical therapist around and he specializes in elite athletes. I have been getting better slowly, so as long as I adequately strengthen my leg before returning to running, it may not matter that I have both a torn meniscus medially and no cartilage laterally. 

So I had my first appointment yesterday at the physical therapist recommended by Dai Roberts, my triathalon coach. My left leg is now significantly weaker than my right due to extensively babying it these past few months. This is strange, because since I tore my ACL on my right leg in 2008, my left leg has been the stronger leg. And over the summer I was told by a sports specialist that I need to focus on strengthening my right leg because it is so weak.

The PT said I should be able to start running next week and gave me several exercises for my hamstrings and lateral rotators. And so rehab begins and the process of avoiding surgery at all costs. I will continue triathalon training and make this the year of triathalons... But I had a dream the other night about racing. Right before the (running) race began up this exceptionally steep hill, I looked at my teammate next to me, a girl. I told her "you have this, but don't slow down, because I will try my hardest and be right behind you. If you let up I will pass you." And so I will return to running, weaker, slower, but with no less heart or determination to be the best I can be and make the races that much more difficult for everyone else!

24hours post diagnosis: Feeling Kinda Lucky

Mulling over the news these last 24 hours doesn't leave me feeling any less fearful of what it means to not be able to put any pressure on my knee for two months including walking. But I do see that I am really lucky in the timing. I feel like I tend to get incredibly lucky. When I tore my right ACL playing soccer four years ago, it was 9 days before my mom's fall break. So I was able to arrange everything and have my mom fly out to take care of me for a week after surgery, which I pushed the insurance company, doctor's office, etc, etc to arrange only nine-days post injury. That way my mom was able to wake me up every four hours to take narcotics and change out my recirculating ice container and I healed very quickly.

The cartilage in my knee could have been torn as long ago as when I tore my left ACL thriteen years ago and was just a ticking time bomb, waiting to fall away. The back of my knee first felt loose last April. It didn't become painful until around the time of the Chicago half marathon at the end of July. At that point I couldn't squat down without a lot of pain, but I thought it must be a pulled muscle or something. My leg muscles have tightened up since then to protect or 'guard' it. It feels similar to when I tore my ACL in terms of how tight my muscles have become and that guarding response.

So if I hadn't run enough miles to get it to start falling away now or whatever else I did, then it could have fallen away at any other point during my career. But this is the year where I need to sit still on my butt and study. It is perfect! Next year, actually beginning in July, through my residency (the next 6.5 years) I will need to be up-down, on my feet, running around the hospital, beating attendings to the meetings. Having surgery and being unable to walk would not be an option. Which would mean that I would have to let something that is 100% fixable for the rest of my life go. Then I wouldn't be able to run without tremendous pain for up to 7 years at least! And the pain would get worse due to increasing damage to the bone without treatment.

When my mom got sick I got incredibly lucky as well. I had great support from Montana State, unreal even, as I took off the semester at the drop of a dime to go be with my mom. Also my background was perfect between a year in biochemistry and two years studying neuropharmacology of stroke treatment. So the teachers there let me put together a research project on the neuropharmacology of glioblastoma treatment (though glioblastoma was not the type of brain tumor my mom had) AND allowed me to finish my classes at a distance. This gave me time to put my 100% into researching my mom's brain tumor and e-mail the top people who were publishing about treating my mother. When I brought her to the National Cancer Institute to meet with Howard Fine's group, who by far had the most experience in treating gliomatosis cerebrii type II (my mom's type of brain cancer), I was offered a job in radiation oncology by the head of the department based on how informed I appeared on my mom's case... in the middle of a recession!

This meant that I got to have a job with understanding people while taking care of my mom, who had taken care of me when I couldn't walk. I got to have a job while being there for my mother in the middle of the night the way she had taken care of me! Once again, despite misfortune, I have come out incredibly lucky. I can get treatment AND do my job... sit on my butt and learn all day. Wow, I am lucky the cartilage broke off now instead of half a year from now, so I can get treatment and make a full recovery. Plus I now know that I can run a 1:22 half marathon without cartilage in my knee.... I can only guess what I will be able to do once I have full capabilities again. Now I just have to get through the next 2 months of not being able to put pressure on my leg while living in a second story apartment....

The Almost-Worst News Imaginable

So I need surgery to run again. The surgery will take some cartilage from a non-weight bearing region and place it in the weight-bearing region that is missing the cartilage. At some point a chunk of cartilage was traumatically knocked loose from my knee and must have just fell away sometime recently. Who knows where it is, probably attached to some soft tissue somewhere. The surgery usually has a high rate of success, meaning no complications for the rest of my life.

This is a view of the back of my left knee, with the right side of the picture being the left/lateral portion and the left being the right/medial portion. On the lateral side of my knee where the femur articulates with the tibia, the lucent space under the femur is where there is a rectangular chunk of cartilage missing. The light area in the bone above the chondral defect is from bone marrow edema as the bone has been breaking down over time due to the chunk of cartilage missing.

In this view of the lateral portion of my knee, you can see the lucent area on the posterior portion of my knee showing the cartilage is missing on the back of my femur. You can also see that the bone marrow edema/lighter portion of my femur goes up pretty far. Apparently this is why I have been betting bone pain on my medial knee and above my knee on the femur, because the bone is affected pretty far from the injury. Once again, the bone should all be dark.

The downfalls. I will not be able to bear weight on that knee, meaning no walking for a fairly significant period of time (possibly up to two months), as the part that is going to be fixed is directly where I bear weight on my knee. Apparently I should be able to swim about 2 weeks following the surgery. I will apparently not be able to bike for ~3 months following surgery because of no weight bearing. I will not be able to run for 5-6 months following surgery, once again because it will be on the weight-bearing portion of my knee. The upsides include that I will be able to run again because this isn't one of those overuse injuries i.e. from running. Many forums I have viewed the people are never able to run again. But if I get the surgery in january by june or july I will be able to run :)

I'm trying to arrange to have the surgery Marthin Luther King Jr weekend, that thursday to be exact. But this will take a lot of planning and I don't know how I will get to class the following week, hopefully I will be able to crutch and be off narcotics by then. My goal will to be able to run by the time I take the USMLEs in June. That way I can run during my next vacation before rotations start and I will really have no time to call my own for many years to come.

To people in the Norfolk area, I will probably need some help following surgery. I will probably look incredibly pitiful as I did following ACL surgery. I will try to line up a handicapped sticker for the time right after surgery so I don't have to crutch to and from school. I have distinct memories of trying to crutch to and from class following ACL surgery in Montana and they aren't pretty. The narcotics made me dizzy so I would regularly do what I called crutch-by vomiting. I didn't want to stop crutching to where I was going, so I would just lean to the side and vomit as I mosied along my way to and from class. This is going to be an unpleasant experience. But that's life, sometimes you just gotta roll with it.

Making a Comeback

Tomorrow I meet with an orthopaedic surgeon about my knee. It seems from the MRI that I do need surgery after all and until I have surgery it will be incredibly painful to run. But nothing will be sure until I meet with a surgeon. Something that has been interesting is how everyone says but you are a medical student, you should understand what is going on. My knee has multiple ligament tears, some appear healed from the previous surgery. It also has a cyst, "densities," and a large chunk of cartilage missing in a manner that looks as though it must be "traumatic", not an overuse injury... meaning I was hit by something and I'm not sure what. Oh, and also a bit of bone missing with bone marrow edema. I had surgery on that knee thirteen years ago after tearing my acl from a sideways hit while playing girls' "powder puff" football. The acl snapped the rest of the way while I kicked a ball during a soccer game the next day. Every doctor that has looked at that knee since has said that acl is loose, meaning the surgeon probably didn't do a great job of fixing up the knee.

So in summary yes, I am a medical student, but I am NOT an expert or even a doctor. One very important aspect of medicine is that expertise means something. I will be better every year that I work and every case that I see and contemplate. That is why I chose the field. So no, I cannot diagnose myself. Further, I am going to try to see at least two surgeons so that I can prevent the knee from getting worse.... because every doctor's opinion is formed by the cases he or she sees and my case is complex. Different surgeons may have different opinions and capabilities. The more complex the case, the more different doctors' opinions will vary on how to  best treat the problem(s).

In the meantime I have been learning how to swim and doing a lot of spinning classes. This has put a huge hamper on my writing, so I apologize for going missing. But when I run my mind and heart are free. I used to compose poetry and songs while running, using the beat of my feet as a metronome. Not having that outlet really changes the way I process information and in a way who I am.  I want to write about swimming, which really is so very very very different than running, but still similar. Mostly I want to disprove the notion that if you are a runner and haven't been a swimmer that means you have pegged yourself into a hole and can't adopt a healthy balance of a sport into your regimen. It frustrates me every time people tell me they don't swim, they are a runner. I am a runner who stinks at swimming. I was never on a swim team and I never competed. Also I was chubby growing up so I didn't want anyone to ever see me in a bathing suit if I could avoid it! I played soccer and occasionally went rafting.

But I'll tell you what I am not. I AM NOT A GIMP! When I am fifty I am going to have kids and take them skiing. I'm going to laugh with them as they beat me down the mountain. I'm going to kick the soccer ball around with them and run after it. If swimming = long term happiness then heck yeah, I am going to keep being a swimmer, even if I suck, don't enjoy it very much, etc, etc. Also when I am 70 I am going to be in those old lady pool workout classes. I'm going to jump around in that water and enjoy it. Because I am not a gimp and never will be! So cheers to swimming and being a runner and don't tell me you aren't a swimmer but a runner because I will roll my eyes and work my hardest to beat you in a running race as soon as I have surgery and can run again! Because I used swimming to keep in cardiovascular shape and strengthen my hamstrings, quads, hips, back, stomach, and lungs so I can be all I want to be!

Dedicated to my Dad: "Athletes aren't normal people"

Is what my new triathalon coach Dai Roberts said to me when we met for the first time on Friday (11/2). He was recommending that I go see a sports medicine doctor. who, unlike the orthopedic surgeon I saw about my knee, will understand my absolute compulsion to run.

For me my compulsion started as a little girl studying the religion of "soccer" with my dad. By high school practically every Saturday and Sunday morning I didn't have a team-game I would be up playing pick up soccer with my dad; usually out on the pitch by 6:30. I loved the feeling driving home and seeing almost no one else on the road, just me and my dad. And we were covered in sweat from running our hearts out for the last 2-3 hours.

When I would come home from college breaks (especially when I lived in Oregon with a 3-hour time difference), my mom would make my dad promise not to wake me up to go play soccer because "I would need my sleep". But he would come by at 6am (3am my time) and whisper "Courtney, are you ready, you sure you don't want to go play?" And I would get up and go.

My dad runs through every injury and always has. Growing up, he was always injured or had a black eye, or something else. Every year he would mention something about giving up soccer because it was hard on the body.... In fact, we were told that if it weren't for our bad knees, we wouldn't be here. My dad had played semi-professional soccer. Then the first lottery he ever won was the Vietnam War draft. His birthday was the first number picked. When he reported, he was rejected because of his knees. As he walked into the reject room, a football player looked up and said "what sport do you play?"

Now he still goes out there and gives it all he has got. He can't see peripherally or when someone sneaks up on one side because he has glaucoma (for which the dutiful man would never try marijuana :) and he is virtually blind in one eye. He also can't see depth because that needs two eyes. But he is out there giving it what he has got because he isn't a normal person; he is an athlete!

My Saturday morning Coaches league

Coming home to take care of my mom I played pick up on Tuesdays and Thursdays nights with one group and Saturday mornings with another. People played through all kinds of muggy, hot Virginia summer weather, and this normal/fun activity with these guys gave me a happy place which helped buoy me through the hell I was experiencing inside. Because of their strange athletic compulsion, I could trust that they would be out there trying their hardest despite whatever injury they were working through. These are my people.

Love this shot, note the head in the hands on the right :)

My dad made me into a Crazy Athlete long before I became a runner with high hopes two years ago. Now I have sustained another serious knee injury. This injury really scared me as I have already torn both my ACLs. But I will cross train and get healthy because I am an athlete, a part of this strange group of people with a crazy compulsion to play. Once healthy, I will put my all into working to qualify for the next Olympic Trials. What makes me crazy? Every day when I get up I think of running for as long as I can for as fast as I can. After that I want to ski, jump, climb, play soccer, kayak over waterfalls, and more! And some day I want to have children and get them up before dawn to go play soccer with other crazed athletes from around the world, showing them the beauty and fulfillment of having drenched their shirt with sweat hours before before there are any other cars on the road. I will make a great comeback because am an ATHLETE, eager to be on the pitch, and a little insane. It *runs* in the family. Tee hee, RUNs in the family!

Me, my sister, and my Dad

Family canoe trip when I was 5

       

My dad in my boat, life jacket, and paddle looking at the leaves  this past month

Me two summers ago going off a waterfall 2.5 months after I started kayaking

Me competing in Missoula a year after starting kayaking; lol, somehow I came in second :)