Sitting here in limbo, like a bird without a song

Sitting here in limbo, but I know it won’t be long
Sitting here in limbo, like a bird without a song
Well they’re putting up resistance
But I know that my faith will lead me on

                                                             Jimmy Cliff

Ok, long time no see. I wanted to wait until I have something firm to report, but I guess the brain and anything that has to do with it is never firm. So here comes the update.

End of March I had another brain MRI and saw the German (!) Brain Neurologist the first time. I like him! I hope this holds on longer than the relationship with/sympathy for my Radiation Oncologist Chick which I met first in November 2011. Her likeability-lvl sank from there on with every appointment - or should I say disappointment?? Let's just leave it at her long term prospects for me did not agree with mine. Hence, I got a second opinion and went to Germany and Rome in May.

In June I had an awesome week in North Carolina with First Descents, an awesome (yes, it needed to be used twice) organization that offers young adult cancer fighters and survivors a free outdoor adventure. Check out my entry for their blog and visit their page for more info:  http://firstdescents.org/.

I had a blast at FD kayaking camp even though I was not able to participate in all activities as planned. Meeting my physical and mental limits half way through the week I felt I was falling short. I am in treatment and my cancer is still in progression which is exhausting in many ways. Being pretty open about my feelings, the support I got from all around, staff and participants alike made me feel good. So the rest of the week I was having fun navigating in the gap between the comfort and the discomfort zone in the supply raft. And boy did I got wet! We did not take the easy way out. My new roll as the second photographer and cameraman was exciting as I looove taking pictures. Recognizing quite a lot of pictures in the slide show on the last night felt good and I even got quite some praise. To be in this supportive environment got me through the week and even made me proud of me and my accomplishments. Everyone was in the same boat of dealing with cancer, either trying to make everyone as comfortable as possible as a staff member, or as a survivor, in or out of treatment. There I felt safe enough to let everyone in and opened up about my feelings. Thanks to everyone for letting me have this experience.
Hatschi (My FD nickname)

I also had a MRI just before I left for FD and as there was no real time to make appointments and my Chick Doc didn't call me in I just went. The German Doc has no access to the MRI data, I bring the MRI DVD to the appointments. As it turned out my Chicky got the MRI results really late - on the day after I returned from FD! She called to have me come in the same day.. "As long as you have a chance to catch a ride, do it. Why take the risk." Nice, eh? There is still the discussion about tumor vs necrosis progression but it's growing and there is some swelling. Gah.
So Chicky is sure it's tumors and wants to Gamma Knife it.
Dr. German (Brain specialist) wants another special MRI to show blood vessels - could swing the vs question in one direction or another. In any case he is not for radiation but for medication. Either Avastin for necrosis or the slight chance for a clinical trail for tumor growth.
My gen. Oncologist does not like more radiation on my brain either as he does not want to turn me into a veggie. He likes Dr. German's approach and checks out other meds that are available now.
Fun fun fun. So another MRI in July.
On the positive side I am having a great time biking on a railtrail close to our house and Up North over the weekends. The time in my hammock is also well spend. :)

In July I still was in limbo with what is going on. Seeing doctors, getting opinions, hopefully making decisions soon.. I had two more seizures and got on steroids. So exhausting. If I could I went swimming in our neighborhood pool and swam a couple of laps. During July and August I worked myself up to 40 laps (1km!) a couple times a week. Biking is a little too shaky right now but as soon as I am tapered of the steroids it will be better again.

Near the end of August another MRI. But no Dr. Chicky anymore. Finally I fired her. And first good news from the MRI: whatever is in my brain stopped growing. It would be soo much better if I would not still be plagued by seizures, dizziness, nausea, headaches and what nots.
My parents were here for the MRI and stayed for 4 weeks. Unfortunately my father threw his back out, Herniated Disc, and got to know some docs and the hospital. All together we got to spend a lot of time together and he is doing much better.

Another MRI is coming in October as I keep having seizures. But the amount and intensity of the events went down with my Keppra (meds to prevent seizures) level going up. So the next update should be coming fairly quick. I hope I can hold myself up to it.

CU soon :)

The Element Song gone wrong or Gamma Knife sucks, so do Steroids.

Literally, those pesky little things suck my minerals right out of me. Mostly Potassium, Magnesium and what not. Sitting at Applebee's with two hands cramped up like crazy and Reed having to feeding me over the table was not a comfy experience. Not that it also hurt like hell, nooo. And sometimes the crampings got really bad, that's when the rest of my body joined happily in. Feet, back muscle, calves, face cramps, you name it. That happened already last year, after the whole brain radiation. It went so far back than that I had to be hospitalized because my heart was acting up.

Not going to happen the second time. We have a plan for this now. I eat all sorts of good stuff. My favorite: Coconutmilk with bananas and cacao mixed in a yummy shake. Dark Schoki is good for me? No need to tell me that twice! I love Mounds. Baked potatoes, spinach, avocado and lots of protein are also on the menu. I don't think we (Reed) cooked so much in his life before. For some reason he does not trust me with a knife in my hand or around hot stuff. Ok, I am a little jittery and dizzy off and on and drop stuff on the floor, but.. well, I guess that is his point.

So far I just had a couple of days where I felt awful, and I am nearly of the Roids. I had a blood test and so far no frantic call from my favorite nurse Lori. So all is good :)
That day at my doc:
Dr. Folbe: How is your memory? - Me: Good.
Dr. Folbe: How is your memory? - Me: Good.
Dr. Folbe: How is your memory? - Me: Jerk. 
Dr. Folbe: Chuckle.

And before that there was the Gamma Knife surgery itself. 15th of July. Same day as the last part of Harry Potter came out. The day where everything ends. What a good omen! And it was painful. Not the 'Gamma Knife' as there is no knife involved, just concentrated radiation. But the screws! Four of them to fix the metal frame to my skull. "Just like a bee sting.." I hear the Neurosurgeon describe the pain he is going to inflict on me. THAT BEE would have not fit through the door!! And than the pressure! I swear they cracked my skull. The two M5 screws in the back of my head were the worst. As one of the tumors sits low next to the brain stem, they had to put that torture device on low. That positioned the rear screws so low that they had to go through some muscle tissue. Yikes. That day I was at the hospital from 6am to 10pm. They shot 14 tumors 28 times. Each shooting or zapping took between 3 and 28 minutes. And with the head resting on two screws in the back of the head/neck, the tummy got a pretty good workout.

It took about two months for my holes in the neck to heal. The headaches got better and the numb feeling went nearly away. So October was a pretty good month for me. Until the 31st. All the ghosts came back when my scan showed that one tumor was still growing while the others stayed stable. I was pretty upset (I wanted them tumors dead!) and the docs had to decide what to do. Dr. Antonucci, my former Radiation Oncologist had just left the Beaumont group and they had to catch up on my case. They worked quick any my next Gamma Knife surgery is set to be on the 10th of November. This Thursday. I am freaking out a little bit but I do try to stay positive as the docs act as aggressive as the cancer does.

So much for now, keep your fingers crossed.