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.

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