Believe it or not, the Bellingham marathon was more challenging physically than the Portland. With the Portland Marathon the following week, I was moving into uncharted territory for me. I had questions of how long my body would hold up and how I’d tackle the mental challenge of covering the 26.2 mile distance again. The second race in seven days was mostly a mental challenge—and I rose to the occasion.
Early in the race, I held back, hitting a pace of about 11 min. per mile ( I hit the first mile at exactly 11 min. by my watch). This comfortable pace was easy to maintain for at least 8 miles. These early miles I was able to smile and nod to bystanders who cheered from the sidelines.
At the half (13.1 miles) I was on target for a 4hr 45min finish, although in the marathoning world, an even or negative split for the two halves is a difficult task. But something inside of me turned on. I sped up, left the pace group behind and never looked back. I sailed through the downhill between miles 21 and 23, a place where I passed many people. All the while, I kept repeating a mantra: Hope. Strength.Determination. Courage.
The last 6 miles are tough physically and mentally, for anyone running a marathon. I had to keep going, and my body was holding on. I increased my pace from 11 min. per mile to under 10:30 min per mile, and even going to under 10 min. miles. Hope. Strength. Determination. Courage. Follow it all the way to the end.
Without that mantra, I don’t know how I would have finished so strong. Around mile 18 or 19 I knew my body was breaking down, and I had little energy outside of what it took to keep the body moving. By mile 23, I knew I had achieved my goal and that if I kept moving, I’d get a PR. By mile 25 (with 1.2 more to go) I realized that I could exceed a PR to achieve a time I hadn’t even thought I’d reach—to beat 4 hr. 30 min.
I did it. What a sweet sight, as I rounded the corner to see the finish line! My stomach churning, lungs near capacity, and worn body I dashed for the finish. I crossed the line for a time of 4:29:29! I was too tired to cry in celebration of an accomplishment, so I received my finisher’s medal, wobbled my way toward the food and promptly stuffed my face with bananas, oranges, apples, cookies, water, and anything else lying around.
For those who question the impact on my body, I have only this to say: the right tendon in my knee is taking its time to heal, but that has not limited my mobility. But other than that, I could have gone running on Wednesday, just 3 days after Portland, as the soreness had mostly vanished, and a light and easy run would have done well to loosen me. The knee is healing, and I expect to run again soon.
For me, Neurofibromatosis pushes down on me–and so I push back. And I am determined to continue pushing. While many of those I speak with cannot see themselves running a marathon, what I see here is an opportunity to use this mantra: Hope. Strength. Determination. Courage. And let it take you where you never thought was possible. It need not be to the extreme, whatever you can do.
Where will you go? Hope. Strength. Determination. Courage. Follow it all the way to the end.
at the finish line
What an amazing adventure this has been. Not only did I complete the Portland Marathon, thus reaching my goal of 2 marathons in back to back weekends, but I also had the best marathon of my life so far! This post is but a brief update that I indeed achieved my goal and am recovering well. My journey to this point has been long, time-consuming, and oh so much fun. Stay tuned for continued updates, stories from the races, and thoughts about future races.
Briefly, before I describe the event, here is the breakdown:
Time span: 7 days (September 27th – October 4th)
Miles run: 52.4 (2 marathons at 26.2 miles each)
Where traveled: Bellingham, WA and Portland, OR
Finish Times: Bellingham = 4.hr 49min. 01sec. / Portland = 4hr. 29min. 29sec.
olympic mountain sunset
I am happy to report that I successfully achieved my goal to finish the Bellingham Bay Marathon and now two days later, I am well on my way to recovery (26.2 miles down, 26.2 to go!). Briefly, it was a beautiful day, a challenging run, and strong finish. The photo to the left is the remaining glow of the sunset behind the Olympic Mountains leaving Seattle. Amazing autumn weather!
The morning came quickly, and I awoke well-rested and ready. With the sun rising in a mostly clear sky, the race began as more than one thousand runners filled the streets of Bellingham.
This marathon presented a unique challenge to me. I’m a tough competitor with my self, and although I say my goal was to finish, I knew I would be pushing myself. The challenge then, is to push hard without injury and to leave enough for the next marathon in a week.
Early on, I felt pain in my rear, a minor pinching pain more annoying than hurtful. It was frustrating to feel pain so early in the race, knowing I’d have to endure it for many miles. Indeed, as the miles added up, so the pain increased. Periodic pain in both knees, lower back, and butt would trade off leaving one or more parts of the body in pain for nearly half the race. As in previous marathons, the pain had its cycles. I tell myself to move through it, and it will pass. Somewhere in the latter miles, I think mile 23 there were signs with words I know, but really needed to see: “Pain is temporary; pride is forever.” Indeed. Keep putting one foot in front of the other and I will accomplish great things to last a lifetime! At no point did I asses the pain to be indicative of injury.
about mile 15
Miles 18-22 and 25-26 were the most difficult for me mentally and physically. Those miles were mostly on the interurban trail and were mostly void of spectators. I had to keep going, and when my mind was frustrated, my legs kept moving. And so, that became one of my mantras: my legs won’t quit. Keep moving. One foot in front of the other. My legs won’t quit. The photo to the right was along the interurban trail, somewhere around mile 15, obviously at a time when I was feeling good.
Early in the race I could have thoughts in full sentences and enjoy the surroundings, but near the end I was reduced to quick phrases and motivating mantras. At the finish line the local brewery, Boundary Bay, was open to serve beer and burgers. Thus as I kept pushing through the last six miles I repeated this: Boundary Bay Burger Beer. Finish Line. Boundary Bay Burger Beer. Finish Line. Finish line…
At mile 25 I almost started to cry. I really wanted to be finished, and another 1.2 miles seemed to be an eternity. Crying, however, too too much energy. I closed my eyes, centered myself, and resumed a rhythm of breathing. Without that moment of internal motivation and refocusing, I might have stopped to walk. But I ran on…
There was a slight downhill in the last 0.2 mile—uff da, that hurt. But round the corner, I saw the finish line and in spite of the pain, pressed on, increasing speed. Oh, how sweet that finish line looked!
Overall, it was an amazing experience. Crossing the finish line gave me immediate relief to the heavy spirit. I finished in 4:49:01. That’s only about 5 minutes slower than my fastest marathon. And today, two days later, I have recovered faster and will be ready for Portland on Sunday—an improvement, I’d say!
Thank you dear readers for following this crazy adventure of mine. The Portland Marathon is the Neurofibromatosis Team Endurance Race. Please consider donating to the Children’s Tumor Foundation, if you have not done so already.
To this date, since April, I have raise $1,050 for neurofibromatosis research. Thank you all!
One week to go before the first round at the Bellingham Bay Marathon, and two weeks before the Portland Marathon! For the previous five months I have been slowly building and training hard. It is during the final few weeks before the big day that one backs off and switches from primary mode of running to resting. This is called the taper, and it is, in my opinion, vitally important to the training plan for a marathon.
The benefits are many: with miles and miles of training underfoot, it is time to give the body and mind a rest and move instead to preparation. I make sure I have all items I will need ahead for the race and the necessary transportation to get there. I also continue to repeat in my head the positive phrases I will need for the duration of the 26.2 miles: I can do this. I will finish. I see myself doing it, enjoying it, and I allow myself into the excitement of the crowd.
These for me, are all a part of the ritual, and have become necessary to ward off the fears. It is not uncommon for me throughout the course of a year to have running dreams. These dreams increase as a marathon nears, and many of them revolve around the race itself. On Friday night one such dream came. It was a frantic dream, one where I missed the start of the race. This scenario is something that always seems to come up for me, regardless of how outlandish it may seem in reality.
Perhaps not everyone will have dreams. Others, have phantom pains. All of us who sign up for a marathon, whether walkers, joggers, runners, or elite, have trained and put much energy into that training. Fear of injury close to the race is common, and while one backs off the miles, the mind starts spinning. A slight pain in the knee might trigger the fear of injury. Or, in my case, at the moment, I feel a sore throat. In this instance, as one of the housemates has strep throat, I’ve been exposed and am taking precautions to ward it off. Hopefully I am not sick; I’ve resolved to compete no matter what, knowing it could be risky should I fall ill.
Above all, the slowing down and tapering down miles allows window for rest and recovery. The body should by now be in peak shape, and can withstand a week of no running without much interruption into the physical condition. The real joy for me is to glow with pride in what I have accomplished in training and look forward to the joy of finishing.
What would motivate me, a sane person, to run 2 marathons in 7 days or for anyone to run 26.2 miles and beyond? The answer to such questions can be as varied as there are runners to tell their stories.
For Dean Karnazes, ultramarathon runner and entrepreneur, that answer came from a place of turmoil in life. In his book, Ultramarathon Man, he describes his entry into ultra running (anything beyond the 26.2 mile marathon distance, can go to 30, 50, and 100+ miles) through a difficult time in life. A one-time high school runner, he hadn’t run for years. But at age 30, from somewhere inside him, something sparked, and one night he ran…and ran and ran and ran.
For me, there is something inside of me that calls me to run. Born out of the struggle with neurofibromatosis, I run, not from pain, but right into it and through it. Below is a journal entry from nearly 2 years ago, just before I ran my last marathon. This is what could posses me to run 2 marathons in back-to-back weekends, the desire to empty myself of the disease…
Wednesday 3 October 2007
I feel sick to my stomach, distraced and ashamed. A new tumor has sprout up on my face, large and knotty. Painful to the touch and physically present with me in each minute. It consumes my energy and attention. It is visible enough to cause a bulge on my cheek. It’s awful to face the world of people I know, who knew me yesterday without this thing on me. In 4 days I will run the Portland Marathon.
Right in this moment I want with all of my being to run and run and run, to experience the pain and exhaustion physically and mentally of running a marathon. I want to empty myself so there will be more room for me without the tumor. This something so big and challenging brings out the inner strength I know is within me.
The tumors, by the way, often will first appear hard and painful, and then become softer and dormant days later. Yet I still have similar reactions when they appear. It’s a pressure I’d rather not live with, but must. And so I run….
The NY Times Run Well Blog mentioned the economics of running, and points to some thoughts by Justin Wolfers, an economist who is also a runner in training for a marathon. I think it’s worth a read. Check it out.
Here’s a quote:
The foundation of all economics is something called opportunity cost. It says that the true cost of something is the alternative you have to give up.
So each hour that I spend running is an hour that I don’t spend hanging out, working or sleeping. How do I choose? Following economic theory, I keep doing an activity only as long as it yields greater benefits than the alternative….
The same logic applies to you. Each hour you spend on your hobby is an hour you don’t spend working harder to get a promotion, studying for a degree, or shopping around for the cheapest groceries.
While I am no economist, I am well aware that running costs more than just an entrance fee. A marathon is quite an investment, from the cost of the race itself (often $80-$1oo+), to shoes (again, $80-$100 a pair, as inevitably running more than a hundred miles in preparation might warrant a quality pair), to the cost of time spent running and not doing other valuable things (social obligations, other lost opportunities…). Arguably, when one runs for enjoyment, that time spent running is valuable and isn’t necessarily at the cost of something else. However, to prepare for a marathon one needs three or four months of training, and that’s if you’ve been introduced to running for awhile. The slower one is, the longer one is out running those 15 and 20 mile runs. I give nearly a whole day to my 20 mile runs from first preparation through the run, refuel, recovery and rest.
When faced with the challenge of how to run all those miles and still socialize, I’ve had to get creative. Some of my friends, while shaking their heads in confusion, also graciously allow me to show up for outings in my sweaty running clothes. I’ve run to meet a friend for dinner and I’ve run to a church meeting. Two years ago I ran to a summer class where I had access to a locker and a shower to freshen up before class. Sometimes I just have to wake up early—not my favorite thing to do, but I can do it.
Above all—and most obviously—I consider marathoning to be worth the cost. (Otherwise I wouldn’t be signed up to my 6th and 7th races!) However, it seems the economist missed the opportunity to talk about the economics of choice with the money and time one has in addition to what one misses by spending time and money running. I enjoy a simple lifestyle and regularly make choices that are sustainable and within my budget. Thus, it isn’t only about what I’m not doing because I’m running, but what I choose to do (or not) in order to continue running. That makes a huge difference in adding value to the many hours of training for a marathon. For example, I will willingly go without common electronic luxuries or forgo food in restaurants to make room financially for another run. I also can choose to walk to work, live in the city without a car, and buy local fresh foods. In turn, my body is healthier, and I add training into my daily routine of working and eating.
So I haven’t lost nearly as much that economist calculates for himself. But that’s just me.
And oh, the biggest reward for me isn’t monetary, nor will I get back in any economic sense the time and effort I’ve put into running. But it pays of big when I cross the finish line after 26.2 miles. What a sense of accomplishment!
This is the third and final installment of my story of living with Neurofibromatosis.
Over the course of the last 5 or 6 years, a neurofibroma tumor has again invaded the right ear canal. At first, the soft tissue would trap small amounts of water in the ear, and I was vigilant about protecting the ear from an infection. However, today, it appears that the tumor has blocked the passage so that less water becomes trapped. This isn’t good news, as it still keeps me on my guard about keep it clear, though quite an impossible task.
While I know there is some hearing loss—a combination of loss to the inner ear and the tumor blocking the canal—I do not know how much. For at least 4 years now, I have used only my left ear on the phone. Sometimes it is embarrassing to miss conversations in person and through the phone. In crowded areas with background noise, I can miss what I estimate to be at least a third of what people say; sometimes this happens on a typical day, too. A new development over the course of the last year that I have noticed, is a slight affect on my speech, mostly when I am on the phone at work. What takes away even more hearing in the right ear is the battle to “unplug” the passage to hear with more clarity; some days are worse than others.
I am growing in my ability to ask people to repeat themselves, but I often let it go, nod, smile, and pretend I heard. Or, about 15 seconds later I piece together what was said by combination of repeating the phrase in my head and guessing. To me, I notice the delayed or non-response, but I have no idea if anyone else notices this about me. This is a daily reality, a daily strain to hear with clarity out of both ears.
And then there is the ringing and pain. While I experience a ringing sound in both ears on occasion, the right ear happens the most often. By my estimate, it happens two or three times a week on a day and perhaps several times during the course of a day. The pain comes a few times a month and is a very intense sharp pain, lasting for about 10 seconds, like someone stabbing scissors directly into my ear drum; sometimes this can happen a couple times a day, but only a few times in a month.
Combined with the presence of the extended tumor on my right side from my chin, along my cheek to behind the ear, it is a rare and complex issue. Usually, neurofibroma tumors need not be removed unless they are problematic, and in the rare event they are malignant. It is obvious to me that there is a problem and I must inquire about surgery, if that is even possible. I fear the chance of a malignant tumor, I fear this is an acoustic neuroma (and wow, is it even possible to inherit NF type 1 and by spontaneous mutation have NF2 as well?? Not likely.), I fear the possibility of the appearance of brain tumors (even thought that is a very slight chance).
Here’s the breakdown of what lies ahead for me: I know at least I need to have a hearing test and see an Ear, Nose, and Throat doctor. The tumor is wrapped on my face, too…so perhaps a cranio-facial expert? They may or may not reccommend I have an MRI. My speech is affected, so I also would like to visit a speech pathologist. And, these are specialists in their own field, but if surgery is possible, I would need to inquire with surgeons, too. And this may take several surgeries to correct. These doctors often operate from separate offices and separate appointments need to be made, which means multiple visits, multiple phone calls—and for me, time off of work to make visits. It doesn’t end there, because I don’t have health insurance. And if I were to get a job with insurance tomorrow, there is often a waiting period before insurance kicks in, and then the insurance company steps in and prevents me from immediately scheduling appointments because I have a “pre-existing condition”. So I wait. But often, in order to see a specialist, I need a primary care physician to refer, and to get that I most likely need insurance. I spent $300 out of pocket last year to see a team of specialists who can give recommendations…potentially helpful, but expensive. And with insurance, the insurance company can (and will) decide at any point not to approve a visit or a reccommended proceedure. Even if they do not understand the disease for which I am seeking treatment.
See how it goes? Last week I was denied medicaid through Washington State. So I will take that denial and seek other options, which include charity care. It’s a long process.
My journey to raise funds for Neurofibromatosis research and to find insurance to find out about my hearing loss and inquire about insurance is ongoing, and I find myself in strange place as health care has suddenly gripped the ire of many. My journey and the journey of others with NF can sometimes seem insurmountable. I share my story not out of political motivation, but out of a desire to take care of myself and for the current and future generations who suffer from NF. I raise money for research out of the pain of my own experience, in hopes that there will be developments and that lacking the immediate tools for my own healing, I will find healing through this effort.
Thank you for reading my story, and if you feel so called, please donate for Neurofibromatosis research.
There is less than a month until the Bellingham Bay marathon—I’m starting to get excited!
20 mile loop
Here’s a break from my story, with a description of how I approach running all those miles. Many people look at me with surprise when I say I’ve run 20+ miles, an impossible feat for normal people to consider. It is possible I tell you! The long run is the life of the training plan for a marathon and therefore I take great care to ensure I complete them. So how do I prepare and what goes into one? Runners have different rituals and means to prepare, but here is how I do it:
Days before the run, I begin mental cheerleading, even if it is only to remind myself: “I’m running 20 miles on Sunday!” Sometimes the revelation is quick panic: “oh shit, I’m running 20 miles on Sunday!?” But I continue to repeat it, and picture myself running. My body knows the distance, so imagination is easier than it was before my first marathon.
The next step is the physical preparation. It takes a long time to work up to this distance in the first place. General rule #1: be nice to the body with rest and appropriate food intake the day before. This means for me that a glass of beer is maybe ok, but greasy food not so much. I don’t like to have much in my stomach when running that far, so I have a light snack an hour or so before, which could be anything from fruit to oatmeal to granola.
On shorter outings I often bolt out the door and let my intuition guide my feet through the neighborhood. A 20-mile run however, requires careful planning with attention to mileage and foot-friendly location. Google Earth is a helpful tool for plotting such a route, although knowing the city, it’s landscape, and neighborhoods aids the use of Google. To find where other people have created loops, go to mapmyrun.com. Also important on the long training run is access to public restrooms and water. A marathon has lovely volunteers who hand out water and aid stations every two miles; this isn’t the case when you’re on your own. Above is the route planned for my most recent run, a 20-mile loop in Seattle; the course was altered en-route to add two miles to my total (it was a good day!).
On my person I have my cell phone, driver’s license, bus fare, a water bottle, and something to refuel such as an electrolyte energy gel. On the market there are goos, gels, gummy blocks, and even a special “sport” jelly bean. My favorite mid-run snack in late August in Seattle are the blackberries. Ohhh, what a treat to taste the sweet juicy goodness after so many miles!
The most important rule for me when running is to keep putting one foot in front of the other. One foot in front of the other, keep going, one foot in front of the other! I take the miles as they come, separating the total distance into chunks. Often this is done by neighborhood or landmark. Other tricks include counting down the miles in the latter part of the run…or in some cases counting down the number of blocks left. “And then there were 10…9….8…” Then…home! For a good 30 minutes after, I am a mixture of adrenaline, endorphins, soreness, and sometimes small amount of pain. But for me, it is worth it for the accomplishment.
This past Sunday I ran 22 miles. The Bellingham Bay Marathon is now but a month away. And I am ready.
I’m running for a cause. Please visit my fundraising website if you would like to donate to the Children’s Tumor Foundation (information and links about NF are on this blog and linked to the right).
Why share my story? This feed to this blog (www.meganruns.com) is linked to my facebook page, and thus all 300+ of my friends may read these words, should they choose. Though facebook is fraught with attention-seeking behavior as we stumble our way through rapidly advancing technology, these words are not. Or maybe they are…yes, I want your attention, and I would very much appreciate donations to the Children’s Tumor Foundation because I want to share something important. Like this definition of Neurofibromatosis:
Neurofibromatosis 1 (NF1): also known as von Recklinghausen NF or Peripheral NF. Occurring in 1:3,000 births, web characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF also have learning disabilities.
Neurofibromas, the most common tumors in NF, are benign growths which typically develop on or just underneath the surface of the skin but may also occur in deeper areas of the body. Neurofibromas, which are composed of tissue from the nervous system (neuro) and fibrous tissue (fibroma), usually develop around puberty although they may appear at any age. The tumors are not contagious. Nodule-like surface tumors are known as dermal neurofibromas. Plexiform neurofibromas grow diffusely under the skin surface or in deeper areas of the body.
Sharing this concise definition from the Children’s Tumor Foundation is good, but not enough. My face is disfigured and every day I walk by people’s curious stares. By using two things I like to do—writing and running—I am sharing a human story about a complex medical issue. Running is a passion and a form of therapy; it makes sense to me to run for a cause so deeply a part of me, literally right down to my DNA. So dear readers (and facebook friends), thanks for being along the journey.
And one last thing to share. There is a man in Texas by the name of Reggie Bibbs who also has Neurofibromatosis. Although I’ve never met him, he is an inspiration and runs a campaign called, “Just Ask.” Here’s a video he created, and a link to his website.
Rejection. Denial. They are common fears shared across the human experience. Overcoming fear of rejection is healthy and can make one stronger; being denied can cover one with a shroud of powerlessness. What I speak of is the power of insurance companies to stamp approval or denial on a patient’s treatment. This post is not political, but it is personal. I am here to tell you my story and to reveal my conviction that one’s health is a fundamental right and not a privilege. By labeling health care in the US a social justice issue I am in no way endorsing one path over another on this blog—I am speaking out against an injustice that penalizes a person for being born with neurofibromatosis. While there may be rationale behind implementing the practice of a waiting period or flat out denial for a “pre-existing condition”, I reject this as means to deny treatment for a genetic disorder.
After my surgery in 1994, the plexiform neurofibroma grew back with a vengeance. It spread from the ear canal and onto my right cheek. By the end of high school, a mass a little larger than the size of my fist hung from my face. Multiple attempts to apply for approval to remove the tumor were met with denial by Group Health Cooperative. Their reason? Denial “unless the patient cannot perform usual activities of daily living.”
Excuse me? This wasn’t some small blemish on the skin. This was a growing mass that was painful, unpredictable, and lacking any other medical treatment except its complete removal. To uncover the extent of the tumor’s reach, a team of specialists must be used, and it is not taken lightly.
In July of 1999 I wrote Group Health a letter and I copied it to the Washington State Health Commissioner. I politely reminded them that neurofibromatosis is the most common neurological disorder—more common than Cystic Fibrosis, Muscular Dystrophy, and Huntington’s Disease combined. I admitted that I graduated high school and was going to college, a normal function of life; this tumor was not nor is it now life-threatening. But I attacked their rationale and asked: why should anyone be denied care for a genetic disorder that is actively manifesting itself by causing pain?
My parents did what many parents of children with neurofibromatosis have to do—they switched insurance companies to find a plan that would help me. With the aid of the University of Chicago Hospital, I was approved under a new plan and underwent my second surgery in July of 2000—this time a nine hour operation. There were complications with the tumor entwined with my facial nerve and ear canal. It was a hellish experience I hope not to go through again. Nine hours of anesthesia really wears the body out and I was so completely exhausted and in pain, that running a marathon doesn’t compare to that first night after the surgery in the ICU.
My third surgery was in July of 2003, a much easier undertaking. Yet still the risk of paralyzing the right side of my face remains, and so has the tumor slowly grown back.
I have lived without insurance for five years now: While in grad school and working a job that can’t give me insurance, I have chosen to remain out of the system. Why contribute my hard earned money to private insurance when they won’t cover me for “pre-existing condition”?
Maybe I will receive Medicaid, or maybe a job prospect will lead to insurance. However, I am not assured that any private insurance company cares enough to change policy on their own. This past experience and others’ stories give rise to my fear of being denied when I do have health insurance. My trust is in the ongoing research to find treatments, drugs, and even a cure for this disease—and the overhaul of our unfair system.
Future generations will benefit from the research of today. Read more about Neurofibromatosis research on the Children’s Tumor Foundation research blog.
To be continued, with more of my story on the complications of the tumor in my ear…
