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 :)

What everyone thinks..

Inspired by Rachel. See, it is not perfect but I love it :)

MRI tomorrow to see what those tumors are up to.

The bitch came back..

The bitch came back the very next day
Oh, the bitch came back, I thought she was a goner
But, the bitch came back, she couldn't stay away
Don't you know the bitch came back?
                                                                   THEORY OF A DEADMAN LYRICS


Where should I start? Going with the timeline thing. So, I had my 2nd Gamma Knife experience November 2011. It was so much better than the first one. From the more limited time I had that torture device on my head to no infections on the back of my head and no steroids (!!!). Those Bee stings were as bad though. - That was not too bad, why did it take me so long to write it? Brains, I tell ya.. The nurses were as awesome as the first time but I had a change in Radiation Oncologist. I like my new one, it's a chick!!! But I do miss Vito.

Than there was X-mas and Silvester. Yes, you named a cat after the German word for New Years Eve :) Beth came over and we had a good party. Xbox Kinex, Wii and SoCo Ginger Ale. Some ice cream and Mint Baileys were involved as well. No idea what else we ate, stuff.. And we missed the countdown. Too much tension in the ski jump competition which, by the way, I won.

Yesterday I got some crappy news from my MRI results. It was a donuts and ice cream day.. Four tumors grew again. Bummer. The MRI was on Friday and I went to get the report from the medical records office Monday. How is that for proactive?!

I had an appointment with my Neurosurgeon anyways, that's the guy who screwed screws in my head twice, 4 screws each. So we asked him about my scan. What else should I talk to him about, the holes in the back of my head are nicely healed. Hmm, not too much, not his expertise. Why did he want to see me again?? So Reed and I decided to hijacked my Oncologist afterwards as he is in the same building. Another win for 'proactive patient involvement'. Much better. Going to have a bone and a CT scan to schedule. Along with my MUGA scan. Reed will have to do the scheduling as I am not allowed to drive, again. Something with my speech and weird stuff going on in my arm. My Onco and the Radiation Onco still have to compare old and new MRIs to see if the four tumors are new or treated ones that just won't die.. Depending on the history of those buggers it's another gamma knife and/or change in chemo. If I get off Tykerb those pesky goopey fingers and toes might go away. One can hope, right? Then we were off to Krispy Kreme and some Starbucks Mocha ice cream with dark chocolate pieces.



Let's see what the next news will be..


Oh ja, could you please comment on the blog directly? Than I can keep them with it and watch them over and over again. What can I say, it makes me happy :) If you want you can just copy and paste it to FB as well.

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.

Have you ever felt so out of place that the smile on your face was to keep from cryin'

~ Happiness is, The Verve Pipe.  My verve pipe.

When your doctor says something like "Oh, Reed is not with you today.." there is nothing good following that statement. I just had my brain MRI and this does not look honky dory.

My seven brain tumors grew but there are no new ones. One of them is close to my brain stem but all the others are in a good location. The planned treatment: Gamma Knife. Zapping those pesty little tumors individually instead of the whole brain again does not sound too bad. But they will have to fixate a funny metal halo on my head. It will be screwed to my skull and that does sound quite uncomfortable. At least it will be a one day deal with no planned overnight at the hospital. And all remaining tumors should be gone after the procedure.

I held myself pretty good together at the doctors. He eyed me a couple times showing me the pictures of the tumors and how they grew. I think he wondered how much information I could take and obtain because he offered that Reed could call him the next day to talk about it as well. With a smile on my face, four appointments for various tests and new doctors, a new prescription and a "Ok, I am fine, we can do this!" I left the office. In the car I took a deep breath - I just have to get home. Lunch out and shopping cancelled. Off the Mini went, music loud enough so I could not hear myself think. Reed had already called but I will wait to be home to call him back.

That was a good idea, because when I called him he asked me how the visit went. 'Not so good', blurred  'They grew' and nothing understandable after that was all he got. He was home 15 minutes later. Oh boy.

I am feeling better now, the CT and bone scan were good, so no tumor growth anywhere else. We went up to the cottage, the boat is in the water and we have a cool new deck. Nancy and Beth came for a visit and we had a great time.

The procedure will be on Friday the 15th. The day the last Potter comes out. Hm, I could see it at midnight before..

My Chemical Romance - Cancer or My Second Cancerversary

Two years ago I was not sure if I had two weeks. My doctors did not even want to talk about my prognosis.

I got diagnosed with Breast Cancer Tuesday June 5th 2009. No Stage yet, but an operation, some radiation and some chemo should do it. I was more concerned with cup sizes for the reconstruction than survival rates as I was on the good side of the curve. Then, on Friday June 8th I was in so much pain I could barely breathe. I called my family doc again and she sent me right to the ER. Five hours later, my life as I knew it was over. Within the blink of an eye (aka three days) I went from a 93% for a 5 year survival rate to a 15%. Big hit in the tummy.

And two years later I am still around, happy go lucky. The longer I live the better my chances are. Like 'Live a day, get one free!' :) Sometimes it does not even feel like a big deal. Life goes on and the whole Cancer thing seems so surreal. Two years already. I feel good and could not ask for better support than what I have. All the doctors and nurses are great, family and friends are wonderful and Reed is the best HubHub there is in the whole wide world. But that's just my opinion ;) Of cause I also have bad days - when everything seems so overwhelming. I wonder how on earth I was able to deal with it yesterday.

My biggest fear is described pretty good in the song Cancer from My Chemical Romance. It is pretty depressing, but true. I talk humorously about the nausea and an unexplained pain here and there. My finger spontaneously bleeds, oh well. Must have caught it closing the stupid Jeans. Dry, itchy and cracked skin is just normal. Just slap more healing lotion on it. There are people who take medications for itchy dry skin that has more side effects than all my meds combined. Plus they get the additional increased risk of getting cancer. THAT is weird.

Being exhausted is common so it is good that I like to relax and meditate (aka being lazy). I joke around about that sometimes I just can't make any decisions and there is a big whirl in my head that sucks all thoughts right out of me. When there are too many people around or I am in a noisy environment, that makes me nervous. Since my brain tumors got smaller and fewer it's not that bad anymore, but it is still overcrowded in there. Some days I want to do nothing more than getting a brainwash from watching too much TV. Easy Stuff. But even the thought about leaving you behind in this world would eat me right up if I stay with it for too long. On a side note, contact lenses do stay in when you cry really really hard. Deep breath.

I am not anywhere near thinking about quality vs quantity of live. But people talk about it. Than I count myself lucky. We have been through too much already and the good times just have to start soon enough again. Most parts of the day are really good already and it keeps getting better. I have plans for July when I go to the First Descents (http://www.firstdescents.org/) kayaking camp. One month after my sister-in-laws wedding, so I can go all out ;) Both events will be awesome.

I guess that is why I take all those pills and deal with it. The chemo pills and Herceptin infusion to fight the cancer. That gave me some side effects with my heart/circulation, so I take pills for that. Than the Anti-Seizure pill. Something for the tummy (heartburn sucks!) and for nausea to handle it all. Now Antibiotics to help with the cuts and scrapes. Some special and generic Vitamins just to top it of.

That is how I do it. One breath at a time. One day at a time. One month at a time. One year at a time. Working with optimism on the 'One decade at a time'. 

Hugs & Smiles.

I had a bad day. Or two..

I had to deal with some unnerving side effects from some of the medication I am taking. Little cuts on my fingers that just would not heal but getting worse and more and more infected. So Dr. Folbe (my Oncologist) prescribed Antibiotics. Nice blue pills. Taking them twice a day on an empty stomach. Unfortunately they induced violent vomiting. So the stomach was really really empty after some time. Gah. I also started to have a bad case of diarrhea and some other thing (*bleep*) that let me worry. That was the unnerving part. For some reason I decided to call my general physician (funny, I always have to think about my 13th grade physics teacher or my father in law when I hear physician) about that. Of cause you have to talk to the nurse first.

"How can I help you?" - "I'd like to see the doctor today." - "What for?" - "Well, I am not feeling well and I have been throwing up yesterday and today." - "Something else?" - Darn, I thought that would get me in.. "Hmm, I also have a diarrhea." - "And what else?" - I must not be convincing, how does she know? There is doctor patient confidentiality for embarrassing side effects, does that also count for nurses? "Err, there is also something weird with *bleep*." - "Like what?" - Tough cookie that one. I told her but spare you the details. - "Are you still throwing up?" - "Well, not right now. But I was up until a couple of minutes before I called you." Otherwise this conversation would be soo different I bet. - "How about tomorrow at 11:30?" - "I am very concerned about that *bleeep* and I also have Cancer." I think I will open my next nurse conversation with that statement from now on. - "Oh, can you hold?" - "Sure." Stupid me, could have saved so much time. How could I forget that Cancer thing? - "Hello, this is nurse#2, how can I help you?" - Awesome, I am the talk of the town. "Yes, Hello, *the whole story starting with cancer*." - "Ok, I will talk to the doctor, can you hold?" - "Sure." - Nurse#3: "Is this unique?" - WHAT?? "Err, it is the first time.." Oh man.. Praying for nurse confidentiality.. Maybe a new doctor? But at least they talk to each other?? - "No, is this Unique Smith? I am looking for a patient." - "Hmpf, no, this is Alex." Jeez Louise.. - Nurse#2: "Alex, I will try to get hold of the doctor and call you back, ok?" - "Yes, thank you."

She did and told me to get Dr. Folbe's opinion. That conversation went easier. Nothing to worry about yet, known side effect. Take the Antibiotic just once a day, take Imodium and *bleep* and all should be good soon. That was Monday, it's Wednesday and all is good again. :)