Sharing Brain Tumor Guilt

I visited to my old office yesterday. I did not anticipate the deep need to reconnect with friends and old coworkers and their need to reconnect with me. I arrived at 1 o’clock and left after 7 pm. During my time there we talked about life, running and current creative projects. I met new people who knew my story. I had learned that one good friend there (who is also a running buddy) was instrumental in getting a prayer group organized while I was in the hospital last year.  One fellow he introduced me to is interested in running a half-marathon. We encouraged him to run the Inaugural Rock n Roll Pasadena Half-Marathon. Then my friend caught me off guard when he said, “Sarah is a miracle. Look what she can do and she had a brain tumor. If she can push forward, you can do this too.” I’ve joked over the past months with friends about having a brain tumor and that they can't say they can't do something if I can do that activity with a brain tumor or post surgery.  Most recently, I quipped at one friend (who was lamenting she signed up for the Malibu half marathon and didn't realize it had so many hills) "You have to do it. If I can do it with a two-inch brain tumor, you can do it." Yesterday showed me that my tumor and story are apparently are large enough for friends to share and guilt people they meet into achieving their best.  While I want to inspire and help people reach into their souls and dig down to find what they can do, I did not expect the ripple effect this would have on my friends…  them pointing to me a benchmark for what success and drive can be… what is possible with the power of prayer and grim determination.

The grim determination got me through a lot- it’s why I was adamant to get physical therapy multiple times a day once I was stable enough to have it, and it’s why I needed to get out and run as soon as I did. The half-marathon 6 months post-op was a need. The attempted half in October was an epic failure, but a good lesson. I have been running for fun and getting better about making it a priority and shifting workouts to get them in before a long day of work. I did some research for a new running friend and found a training program for her. After joking around last Saturday and telling her she better get on it and train to do the Pasadena Half Marathon with the running group this February, I realized HOLY SMOKES THE HALF MARATHON IS 12 WEEKS AWAY! While my paradigm has been continually shifting, I must shift it again. I have to stop running for the sake of running and letting heat/cold/time (name the excuse) get the best of me, and I need to TRAIN. The program I found is not too different than what I had laid out for myself, but it’s from running guru HAL HIGDON.  That said, the Sunday after Thanksgiving is exactly 12 weeks from the half-marathon I have already committed to. I want to have the best experience possible while pushing myself physically and mentally. The question of the next marathon still lurks in the distance, but getting to a marathon as in life, I have learned, is about a series of successes and setbacks- it’s all about how you handle them and push forward.

Another Paradigm Shift...

With taking on a fitness challenge, setbacks are inevitable. I wouldn’t be serving myself or anyone else if I weren’t honest about the stumbling blocks I’ve encountered. I have continued to repeat Week One, hoping that I would be able to be more successful than the previous week. I’ve been told that “hopes” should be reserved for Santa Claus and that I need to be pro-active with my paradigm shift.   (Even though I have already shifted my paradigm once from a sedentary lifestyle to endurance runner.) People tell you to “grab the bull by the horns,” but really, this is difficult, no matter how many times you have or haven’t done an activity.

You cannot compare yourself to others; you must compare yourself to yourself.  I know what my body is capable of, but still this year is different than last year. Sunday marked the 3^rd Malibu Marathon. It is only a year ago that I ran my 5^th half-marathon with a 2-inch honkin’ brain tumor. Today, I need more sleep and face other challenges. Fortunately, my health isn’t in jeopardy like it was last year, but my health is different. Even though the tumor is gone, I was not able to maintain cardiovascular or quad fitness it takes to tackle the Malibu Hills. I can blame one of my doctors for sending me into a spiral depression so I said, “forget running,” or I can blame God for giving me a brain tumor. Really, the only person I have to hold accountable is myself.  It is for that reason my poor workout accomplishments are above.

The laundry list of failing each “new” week is quite extensive. With my setback, I remember to relish some of the accomplishments, and attempt to keep those as reminders to forge ahead. I over came a frustrating summer.  My Garmin died during one run and I have yet to send it back to get a replacement. I started wearing my Timex like I did when I fist started running. I took it back even more and threw my “drt equation” (distance equals rate times time) out with the trash- I simply started focusing on distance… I’d get there when I’d get there. Speed would come. And so far, it is slowly coming back. I did all this, and then I was saddled with something that added another layer of complication: more responsibility at work.  That said, I have taken the advice of other running enthusiasts: Get your run in before work, then it won’t matter if you work late.

Last year at this time I was feeling pretty crummy and couldn’t understand why.  My journal even quips that I wonder if I have a brain tumor because it’s the only thing that could make one feel this bad. I’ve got almost everything I want- family/friends, my health, great job, and soon a 7^th half-marathon. I’m not worried about time (although, if we’re being honest, it is fun to think about), I just want to finish and finish strong.

Welcome Guest Blogger David Haas!

The Importance Of A Cancer Fitness Program

Someone facing the struggles of cancer will have a hard time thinking about staying fit. But exercise is vitally important, whether he has just been diagnosed or is going through treatment. Maintaining some level of exercise each day can make all the difference in energy level and treatment outcome. A sensible cancer fitness program can help.

Exercise benefits people with all forms and stages of cancer. Oncologists can recommend the best programs for their patients. It may be hard for men with advanced mesothelioma to do anything more than walk across the room, due to breathing difficulties. And women are consigned to basic physical therapy and breathing exercises following breast cancer surgery. The intensity and duration of exercise will differ for each person, but almost everyone can do something during cancer.

The Benefits Of A Cancer Fitness Program

Exercise benefits everyone, and it is essential for cancer recovery. Patients can do a lot more than they think, even during chemotherapy or radiation treatments. Certain physical tasks may be too hard for some, but physical therapists and personal trainers can design realistic programs for their patients.

The National Cancer Institute describes exercise as a “critical component of energy balance” which, along with diet and weight, influences health. Exercise controls weight, blood pressure, and blood sugar levels; maintains healthy bones, muscles, and joints; strengthens the lungs and heart; and promotes emotional well being. Copious research links exercise to reduced cancer risk, increased survivorship, and improved life quality.

Three Components Of A Cancer Fitness Program

Medical experts note three important components to a cancer fitness program -- flexibility exercise, aerobic activity, and strength training. Stretching keeps joints and muscles limber, which is essential for people who are bedridden for long periods of time.

Aerobic exercise, known as “cardio” in the gym, is anything that works up a sweat, increases the heart rate, and gets the blood pumping. Jogging, bicycling, and swimming are good aerobic activities for people with cancer. Cancer treatments zap the strength, but strength training combats this side effect with muscle building. It keeps patients strong for the fight. Isometric exercises or lifting weights are good ways to get this type of exercise.

The American Cancer Society recommends between 30 and 45 minutes of exercise, five or more days a week. The exercise should be moderately to vigorously intense. As each cancer experience is unique, patients should talk to their oncologist before starting a cancer fitness program.

Marathon Drop Out- No Shiny Medal For You... (to the tune of "Beauty School Dropout")

Yesterday, I had one of those runs that no runner wants to have— I dropped out of a race.  No one ever trains; pays registration; wakes up early all to drop out of a race. There are a myriad of reasons why a runner may do this, but I guarantee that odds are if you do this once, no matter what the distance, you’ll likely never do it again. If you were sick, you may tell yourself that you will never race while sick again and if you got injured, you may say, I’ll train smarter. Sometimes these dropouts come out of the blue and no matter what you do, it can’t be avoided…. A spectator crosses into you causing you to tumble over; a twisted ankle; etc.  Yesterday marked my 8^th long-distance run in the three years I’ve been long distance running, and every race I’ve seen a runner hobbled on the side of the course… yesterday, it was me who pulled out. We all have our reasons for dropping out, and even if it is sensible to others, to us, it is the end of the world.

But, Sunday was a learning experience.

Part of the NF Endurance Team
walking to raise money...

I had been diligent with training, so much so that six months after brain surgery, I was able to do a half-marathon. Did it hurt? Sure, but I did it... But yesterday showed me that each race is different.  The summer was very difficult, with 90+ heat after work and the weight of a suggested second brain surgery for this fall, staying in marathon shape was more difficult than I could have imagined. Thinking about the ICU, and the slow rehabilitation runs and how my neck hurt from longer runs because the muscles had been sliced apart…. This idea alone messed with my training more than the surgery itself. Training, really training and doing 20-40 miles a week was something I wasn’t emotionally equipped to do. Despite the poor training, I was going to take the opportunity to walk with the NF Endurance team and spend the whole 13.1 miles supporting friends doing their first half-marathon and getting to know each other more while raising money for the little-known condition, neurofibromatosis.  Having missed them at the start and then not being able to find them at mile 1.5 on the back portion of the out and back- facing 13.1 miles alone was daunting at best.

Fall started blowing into Los Angeles recently, training didn’t seem so difficult with cooler temperatures. Little things like my running GPS dying did not bother me, nor did the unconventional work hours. I had a rollercoaster summer, but made it through August and September with no surgery and two surgeons telling me to stay far away from the O.R. These small setbacks were not going to get me down… I’m training like it was my first marathon again. The only difference is- Now I know how much work it takes and I know how terrible the wall feels.  Even though some weeks were tough on my training schedule and I’ve been repeating them, I knew getting back to where I was would take some effort since I allowed one opinion of “You must have surgery” to scare me into nearly a nearly static life.

I’m sure this residual brain tumor will take me on a rollercoaster for the rest of my life, I just have to mentally prepare and remember that I should just keep doing what I love doing.  Even though I have been better about training, I need to take Sunday’s setback of dropping out of a race and use it like most of my setbacks and let it springboard me into something better.

It seems that there’s no point in having setbacks if you don’t learn from them to be a better you. August taught me to just stick with it and push forward and the Long Beach Half Marathon taught me to train smarter. Together- training, along with friends and prayer, will push me to my next race February 19, the Inaugural Rock n Roll Half Marathon in Pasadena. 

I feel like I’ve gone a couple rounds with Tyson

I feel like I’ve gone a couple rounds with Tyson. 

During hiatus, I flew to Connecticut to see my family and throw my very-pregnant sister a baby shower.  Following my time, the plan was to fly to San Diego see my brain-tumor specialist/lead doctor and the neuro-surgeon vetted by him so we could plan for surgery. Following the meetings, we’d drive back to Los Angeles so I could go to work.

Anticipating surgery, we looked into UCSD housing for patients and families. Everything was going according to plan. I met with my lead-doctor and the next day met the new neuro-surgeon. During my meeting with this very fancy surgeon, we got news that rocked our world. The surgeon said, “I don’t want to do surgery.” THIS IS THE HEAD OF THE NEUROSURGERY DEPARTMENT! He elaborated that StereotacticRadio Surgery (SRS) was the way to go with this type of tumor.  He was afraid of hurting me further with another craniotomy, spilling cells, etc...

Now, rather than messing up the second half of my hiatus, I had to miss work on account of this blasted tumor. I phoned my very understanding bosses to let them know I was going to miss work while the superb nurse practioner strong-armed the radiation surgeon to see me the next day. SRS is a great type of surgery for those with NF2, but there is little evidence for those with NF1. (I have been told in the past, radio surgery or any type of radiation could turn me into the toxic avenger.) Now, it was time for more research to find the merits/drawbacks of SRS. We enlisted family, friends and whomever we could bring on as allies.  The search involved experts from Boston, to Baltimore, to Los Angeles and everywhere in between. While getting knocked around this whole, I feel like I became Pac-Man, gobbling up as much information as I could and asking for more.  (I’m still at the asking for more point.)

We were not fully on board with radiation, but we tried to embrace this concept. Serendipity struck when we ran into my lead doctor in the parking lot at the Radiation Center. He was as shocked as we were that I had a visit.

We embraced this new procedure as much as we could. Here we were, putting our faith in one paper that touted the merits of SRS on patients with NF1 when we got a call from Baltimore.  DO NOTHING AND WHATEVER YOU DO, DO NOT GET RADIATION. She talked about her three patients- all were like me and all didn’t fare well with radiation to the point where there health was worse for it.  You could not deny her very definite opinion, but the Brain Tumor board still had to meet to discuss my case. I was numb. I did not want to get happy or sad until I had the final meeting with my lead doctor after the Brain Tumor Board meeting.

Despite the plan to get eight hours of sleep, the sleep I got this whole week has not been restful. It’s been tough to trust the papers and tough to wade through all the studies done. My lead-doctor quipped that I “went on an email blitz.” But, that’s what you have to do- I want to make sure everyone is talking and giving me as much information as possible so I can make an informed decision.  

After getting knocked around this week, the Brain Tumor board came back, and the result is still the same as it was in February and then June. DO NOTHING. Come back in 3-4 months, and we’ll see.  I’m breathing a bit easier, but I don’t feel comfortable taking breaths of ease

Interestingly enough, I grabbed one of my Runner’s World magazines before heading out the door- “RUNNING WITH CANCER.” My bloody tumor is not cancer, but I still have a foreign object in my head, and I still have to fight. The runners profiled had to get on chemo, or radiation, or lose a limb. We all have our hurdles to deal with as runners and non-runners. Running has certainly helped me before I began this journey in December, and I know it will help me as I continue down the road of MRIs and doctor’s visits. 

The small town I grew up in does a marathon every year. It isn’t your standard loop and it’s not a point-to-point course like Boston… It is a several mile loop that you repeat until you’re done with 26.2 miles. One friend suggested I make that one of my next races. Who knows, I might. The town has been very worried, and after Hurricane Irene has blown through, my sister is anticipating driving around to tell them that it was a false alarm by a vey well-intention doctor. Right now, I have two half marathons on the horizon, one with the NF Endurance Team and other in February with friends. While there will be good and bad days with this tumor, there will be good and bad days with my training.  I just need to keep putting one foot in front of the other and move forward.