Sunday, August 28, 2011

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.

Saturday, August 27, 2011

A Retrospective on the Last Month

As anyone living with a brain tumor can tell you, the process is not easy. Like training days- there are good days and bad days and some days will be easier than others. I was prepared for this, but when I got the declaration from my secondary brain-tumor expert that I need surgery, and no, I cannot wait a couple months, hanging out makes me feel like an elephant in a room. 

I love my friends, and I’ve always relished opportunities to hang out with them and meet their friends. To be able to connect more with the people and be able to pull them into my fold of friendship is something that I’ve always enjoyed. But for the past month, hanging out with friends where people I may have met only a few times before was not appealing. There was that thing looming over my head like a giant neon sign- brain tumor. When will the surgery be? Where are you having it? What kind of brain tumor is it? Is it Cancer?  Aren’t you scared? These questions not only put me on edge, but they took away from the meaning of why we were gathering. The gatherings were not for me to receive attention and questions.  The gatherings were for something bigger— a birthday, a return home, a baby shower…  I do not want to have the focus put on me, especially in this way.  If/when these questions are not asked, it feels like they are on the tip of everyone’s tongue.  Those who are friends quietly ask me a more provocative question away from the group, and those that are on the perfierary may want to know more and when I tell them, I get the look and usually the series of questions.

For a long time, it seemed best not to tempt fate or to start a series of actions that will result in the same thing- a question or look of “Poor Sarah.” For this reason, I have chosen my activities carefully.  Sometimes, there are prior commitments that keep me from celebrations where new and old friends will be, and other times, it’s just easier not to be the elephant in the room.

Tuesday, August 2, 2011

Training Detours

Training for a marathon takes commitment and guidance. If you look online, many of those schedules are 18 weeks long and then you have the big race. I think the theory behind this is to get the inexperienced runner across the finish line with minimal injuries before they get bored of the training. The problem is, training this quickly can result in injury, and the best way to run a marathon is to train steadily. I’m still supremely grateful to my running coach who laid out a plan of 33 weeks. It allowed for multiple long runs of 18-20 miles and it allowed for injury and detours.

These detours are never fun, and sometimes you find it necessary to shift your prospective. It’s even more frustrating when detours stop you from getting to the start line of a race.

With my traveling to see specialists, staying on a schedule was already difficult. I was shifting my training from afternoon to morning just to beat some of the summer Los Angeles heat, but when you try to see doctors before work just to muster up the courage to run in the heat after work is difficult.

The weight training I have added to my routine has made me stronger, but hasn’t helped my cardiovascular system to keep me going the 26.2 miles to get me across the finish line of a marathon.  Naturally, to get across the finish line, I would have to add in more weekly mileage. But, this recent training has focused more on building total-body strength.

After nearly 8 months, my neck is finally stronger and I have been able to start back with pushups with a stability ball. The Ragnar Relay of 190 miles through Napa Valley was on the books with a half-marathon to raise money for the Children’s Tumor Foundation was going to be October 9… all those will have to wait for future races.

I still have the benchmark goals to reach as I get back into marathon shape, but as with most training schedules, I must take a detour. Unfortunately, this detour won’t take me a couple days off course; it’s a detour of several weeks, and more likely several months.

I’ve sought opinions from many renowed specialists in their field, and they have encouraged me to have ANOTHER operation. Well, at least this won’t be looming over my head, but darn- it’s frustrating. Surgery will likely be the same week as the Ragnar Relay (naturally, I won’t be able to participate in that)…. And it leaves a big question mark over competing in the Long Beach Half-Marathon. I have friends competing there and I want to be there to support them, but weather I will be going as a spectator or as a runner/walker will be contingent on my surgery, and the blessings of my doctors. After all, I want to have a long running career, and if that means sitting on the sidelines rather than jumping the gun and risking injury, spectator/cheer support is what I will do.

Among prayers and good medicine, my doctors credited my running as one of the reasons for my speedy recovery. As co-workers pointed out I only missed 7 weeks of work.

My current doctors have said that I am much healthier than my last surgery and it’s “only a little tumor,” and I will be out of the hospital in about 72 hours. I bring Ryan Westmorland, a Center Fielder for the Red Sox who had to have surgery to remove a similar tumor. He walked the day after surgery, and I have repeatedly said that I want to do that. They again assure me that I will be able to do physical therapy the day after surgery.

It’s tough not to fall down in the pit and let it get the better of you- you can always question- what’s the point? Why should I bother doing anything? I’m just going to have to do it ALL over again. The truth is, sure I will have to do it all over again, but if running more miles a week in the sticky icky CA sun and combine it with weight training means a more speedy recovery, then that’s what I will have to do.  Other outlets in my life have taken a nosedive, but now’s the time to focus on health so I can do all those other things for many more years.