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. :)

Sometimes..

I know that probably everyone just means it well. But still, sometimes I'd just like to scream, duck and leave reality behind. There I lie on the couch, feeling pretty ok and not thinking too much about my struggle with that stupid cancer. Then comes the sledgehammer, either as a TV commercial for the 3 day walk ("...compared to what a cancer patient has to go through...") or a FB call to arms to raise awareness for Breast cancer.

As I said, people mean it well and by no means do I want to dis anyone who joins the fight against this awful disease. However, I am as aware of it as one can be, and just for one day I want to unsubscribe from all of it so I won't be reminded constantly. Is this tiny little egoistic wish too much to ask?

Another fun thing: telling people how I feel. Most times I feel ok. Not too bad considering, I guess. "Are you lying?" is often a comeback. Mostly I confess with a smiling "Yeah" and good friends leave it at that. Do you really want me to think about all the "normal" suffering I had to deal with within the last couple days? My ok now is not my ok 2 years ago. But hey, we all get older and our bodies give us a little problem here and there. Mine might be a little more numerous or harder but they still don't defy me. I don't remember the last time I threw up or had really bad pain. Who would want to?? And with those stupid brain tumors it's easy. My short term memory is still not back to where it was supposed to be before the tumors or the radiation. But at least now I have an excuse ;)

But don't get me wrong, if there is something wrong with me, out of the ordinary, I will tell you. I won't blurt it out on FB but if you care enough to ask, I will do my best to answer. Depending on the situation, obviously. As of right now I feel more tired or exhausted than usual (Seizure meds?) and my skin is very dry (Chemo pills?), but the acne (again prob. Chemo pills) is clearing up again and it feels like this time it is for good.

So thanks to everyone who is involved in fighting Cancer or any other awful "stuff", supporting those who suffer (*Hint* Bras for a Cause *Hint*) or just plain old think of me and send some positive thoughts my way.

There and Back again

~ LotR

Long time no see. It got worse before it got better - where would be the fun if it would be different? Writing and reading were extremely un-fun. It did not click and going through the stuff I wrote took too much out of me.

I am so thankful for everybody who helped me through that time. I am doing great now, the last MRI came back good. Nothing grew, some shrunk and another tumor is missing :) 7 more to go. Next MRI is in 2 months.

I "kind of" edited the posts I wrote before and here they come, some were quiet amusing :)

Everyone is getting older, the mind slows down and stuff does not make as much sense as it used to be. That is just normal. To being taking on that ride with 35 is just plain old weird. Right now my brain seems to be in a sleep mode most of the time. But once a while it starts buzzing (literally, I can hear some static going on in there) and goes in overdrive. Both times I try to enjoy the ride. When my brain is firing up I write the blog or send emails out at 2am as random thoughts pop into my head. When more close to sleep mode I try to relax and just let it go. I have faith and trust that it will all come back. Trying to hold on or even mourning about it is just no fun. So I don't do it. I am getting a little preview of what my mind might be in 50 years. Than later I can say, yeah, did it and I even got a T-Shirt. And everyone knows that when you can get a T-Shirt for something it, could not have been that bad.

---

But it is not all fun and games. Sometimes it gets to me. This time it feels more personal, it is really coming after me. The first time the cancer attacked was more than bad, but this feels worse. I did not like to be sick, being in pain or nauseated from all that chemo they pumped into me. But it was somewhere in the body. I was tired, exhausted and just tried to sleep through it. Now it is in the brain. My brain. That is me, what makes me me. I don't like it. And I don't like the changes it does to me. I am a numbers person. They make sense. There is a logic. Sometimes I can barely get a proper tip amount together or even get a grip on what I have to pay. Yes, she just told me but I have to look at that number and take a couple seconds. And than I might just hand her a card anyways. This is the time when I just step back, try to relax, take a breath and have trust in Reed, my family and friends to take care of it. If I owe you money just tell me (over and over again lol) or Reed. Sometimes my fine motoric skills fly out of the window. Writing is slow and it takes effort. Reading is down to 10% of my normal speed.

---

My brain is working slower. I feel it and I don't like it. I try to relax about it and have faith it will come back. A Duplo can give me a little burst, but not back to 100%. Speaking and understanding are even a little slower. This is the frustrating part. That they are not on the same level anymore. So even when I get a fairly clear thought (with some effort), there seems to be another thick layer of something I have to get through - lets call it silly putty - to be able to communicate that thought. There is a little mismatch between thought and word. It is normally the same or translates/transforms instantly but right now wrong words come out, or no word at all. Totally weird. And absolutely frustrating. Seconds go by and slowly slowly that little transformer whines itself up - I actually have a picture of her in my head right now. It is an Irish fairy at a stream, the air is flurry and full of pollen and all is green. She gets up slowly, pulls it's attention from that nice environment and starts doing her job, not being particularly happy about being pulled away out of her happy place. Maybe this is my happy place. I know that if I would be there right now, I would be in completely peace. I want to go there and sit there and stay there right now, relax and wait peacefully until everything is over. It will be all good again and until than, you can just sit here, right next to me. She has such a pretty voice. We won't talk a lot. I might just point out the one or other bumble bee or butterfly that flys by. No worries, pay no attention, it will come back and you will have plenty of opportunities to look at it. Relax. Breath. Warmth. Just be. Enjoy. I am crying. I want to be a like T'Pol from the new Enterprise. I need to learn how to meditate. Maybe I should be a Buddhist. They always seem to be so happy. All this openness and fresh air and colors and fabrics. Sounds wonderful right now. And for some reason I think they would let me eat lots of chocolate. Yeah, chewing my Duplo right now. Need a brain burst. My mind is really all over the place today.

And than there are phone calls. I had a couple in the last days and I seriously consider just answering the phone when Reed or good friends call. Take what I said about talking and subtract that I can't see the person that I talk to, I might not even know the person. And than they all speak English!! LOL. I am not sure I can do it. It would not be instantly like throwing a Napalm bomb into my little Irish fairy dream, but some flames come up and sooner or later it looks more like Platoon than Irish Moos.

It is nearly 9am now. So it took me four hours to write this. Yes, there were some detours, Leo dictionary word searches and I looked at pictures from Silly Putty to Platoon. But my mind speed seems to be more compatible with writing, where I can just take off and Google random thoughts, come back in five minutes and pick up where I left.