I will have one more brain zappings. Than all fourteen are done. Can't wait to stay home all day Thursday. The last one was actually not as uncomfortable as the other ones. My skin is a little burned, sore and tense from the Radiation. But my mask they put on my face to clamp me down on the table was so fresh and cool that it took me less time to relax and endure the 7ish minutes I have to lay still. There is some buzzing, bright lights going on and off and the smell of Ozone. Than the machine drives around my head and it zaps the other half of the brain.
Three to four nurses/technicians come back in, two take the mask of and help me to sit up slowly. The towel and rubber band around my feet are gone somewhere in between and I already did hand over that nice soft blue ring I had in my hands a couple seconds ago. A joke that they just have one more chances to bedazzle my cool Tigers cap, glasses on, short check in the mirror and I am out again.
I also saw my Doc and Nurse today. He is really happy about my reactions to the radiation and will see me in two months again, after an MRI. He also gave me the address for a place to buy the best apple fritters ever and I just might post it here later. After I tried them. Just making sure there are not all sold out when I make it there. It's a little place, what can I say?
My Nurse Chris gave me three different cremes which feel wonderful on my skin. Moisturizer, Healing and Anti-Itch. Just the scalp is a little tricky. Most of the hair is gone, GI Jane to Cow Pattern in two days. Annoying. All should just go bye-bye at the same time. One shower, done. But - the Scotch Lint Roller works actually really good. Not too much pull and it gives you the satisfaction to be in charge. No more shedding for the next two hours or so and I have some peace. It is cut really really short and still, can't wait to have it all gone. Going to put a massive layer of cool goodness all over my head without having to pick hairs of my noise, chin or wherever those little buggers manage to paste themselves to.
So if you hear something today at 3pm, that will be me ringing the Big Brass Bell.
Wednesday, September 22, 2010
Friday, September 17, 2010
You were bitten by the beast. You bear his mark now.
~ The Wolfman
Ok, show of hands. Who has seen the movie? And now who still wants to see it? And now those that are to scared. Yup, that would be me. Poor Reed would not get a good night sleep for days while I take over the bed with some well placed martial art moves in my dreams. I swear I could catch a fly alive with chopsticks while I sleep.
The previews are enough for me. My friend Martina is here from Germany and we are watching all the cool Comcast on Demand shows she will be able to see home next year. And each show seems to have each own ad. So we have seen this poor beast with wide open eyes, his fingers bending unnaturally, him having no control over his body and being tossed in ice water over and over again. I feel sorry for him. I feel for him. Especially as my right hand just joined in. WTF! Is this real? My hand cramps up and I can just not believe that my ring finger can bend this way. Martina's eyes are now wide open and staring at me. I am spechless. I can just look at my hand and keep breathing.
We had so many plans for her vacation. We were supposed to leave for Chicago last Wednesday. Fireworks at the Navy Pier. Burger at the Hard Rock Cafe, sharing a deep dish at the Uno and than some good old Blues in the House! Maybe the Shedd the next day. Or the park. Depending on the weather. Than off to Minneapolis. Found a hotel downtown, close to the Hard Rock. Shop till we drop at the Mall of America. Bubba Gump Shrip. Girls got to eat :)
Duluth by Saturday night, meeting up with Reed and celebrating Dan and Kates wedding!! THIS will be sooo awesome! I am so looking forward to seeing them and just making their day as special as humanly possible.
Monday Reed will drive home and we will scout around the UP. Hotel and Picture Rock boat tour found and bookmarked. Mackinac Fudge and little store where we will by finger nail polish that changes color in sunlight here we come. Hanging around the Black Fin in Royal Oak and than Following Ben Stillers and Bones footsteps in the Smithsonian.
Bam. Instead I bet she is thinking about how to get me to the ER. We will take the Mini, way more fun to drive. She has been driving me to several CT & MRI scans, appointments and all the radiation treatments. What would I do without her? I have no idea. We have been hugging, crying, laughing, joking and bitching about all the news and support and also bullshit that flew my way the last week or so.
And my hand is fine again. This had had to hurt but I do not remember if it actually did. Freaky.
We're at the airport, Martina goes back home. My mom came yesterday.
Me: 'You were bitten by the beast.'
Martina: 'You bear his mark now.'
We both do. Hugz, I will miss her.
Ok, show of hands. Who has seen the movie? And now who still wants to see it? And now those that are to scared. Yup, that would be me. Poor Reed would not get a good night sleep for days while I take over the bed with some well placed martial art moves in my dreams. I swear I could catch a fly alive with chopsticks while I sleep.
The previews are enough for me. My friend Martina is here from Germany and we are watching all the cool Comcast on Demand shows she will be able to see home next year. And each show seems to have each own ad. So we have seen this poor beast with wide open eyes, his fingers bending unnaturally, him having no control over his body and being tossed in ice water over and over again. I feel sorry for him. I feel for him. Especially as my right hand just joined in. WTF! Is this real? My hand cramps up and I can just not believe that my ring finger can bend this way. Martina's eyes are now wide open and staring at me. I am spechless. I can just look at my hand and keep breathing.
We had so many plans for her vacation. We were supposed to leave for Chicago last Wednesday. Fireworks at the Navy Pier. Burger at the Hard Rock Cafe, sharing a deep dish at the Uno and than some good old Blues in the House! Maybe the Shedd the next day. Or the park. Depending on the weather. Than off to Minneapolis. Found a hotel downtown, close to the Hard Rock. Shop till we drop at the Mall of America. Bubba Gump Shrip. Girls got to eat :)
Duluth by Saturday night, meeting up with Reed and celebrating Dan and Kates wedding!! THIS will be sooo awesome! I am so looking forward to seeing them and just making their day as special as humanly possible.
Monday Reed will drive home and we will scout around the UP. Hotel and Picture Rock boat tour found and bookmarked. Mackinac Fudge and little store where we will by finger nail polish that changes color in sunlight here we come. Hanging around the Black Fin in Royal Oak and than Following Ben Stillers and Bones footsteps in the Smithsonian.
Bam. Instead I bet she is thinking about how to get me to the ER. We will take the Mini, way more fun to drive. She has been driving me to several CT & MRI scans, appointments and all the radiation treatments. What would I do without her? I have no idea. We have been hugging, crying, laughing, joking and bitching about all the news and support and also bullshit that flew my way the last week or so.
And my hand is fine again. This had had to hurt but I do not remember if it actually did. Freaky.
We're at the airport, Martina goes back home. My mom came yesterday.
Me: 'You were bitten by the beast.'
Martina: 'You bear his mark now.'
We both do. Hugz, I will miss her.
Tuesday, September 14, 2010
Me and my Monkeys..
~ Robbie Williams
I am feeling better and worse at the same time. All those new meds and the Radiation seem to have calmed my monkeys down a bit. No more playing whack-a-mole on my head with Nerf baseball bats for them all the time. Or firering random blunt fireworks (aka MI legal ones) inside my brain.
But than they got gloomy. They steal people out of my head! I remember that Enterprise Episode where more and more people from the crew disappeared. And noon seemed to wonder. But I do wonder. I could have sworn there were people around me a second ago who knew exactly what is going on. Someone I could relay on, trust. There was someone running by! Where did he go?? Someone?? Or was that me?
It is so nice and calming here. This wide open white room and this couch look really comfy. Now I remember. I will lay down there and snuggle up in the plush blanket. Nice and warm. Just relax and everything will be fine.
And I am back. Fell asleep during the Eureka Season Finale. One of my many new power naps I drift into randomly during the day. Just another stupid dream. Reed is sitting there smiling at me. He is here. He knows what is going on and what to do. But I am still scared. I don't like to forget stuff. I don't want to loose brain function, brain cells, short term memory and what not. And my head hurts again. This strange pressure on my brain. Time for more meds. Anti seizure and high dose steroids. Those are coming with night sweats, chills, dizzies. Or they are the side effects from what else is going on in my head.
But at least I am awake. I am here. This is my universe! Beat it, Monkeys! There is my cell phone. All these names and numbers in there. They all know me. They are all here for me. And I am thankful. I will hold on to it. I can do this.
I am feeling better and worse at the same time. All those new meds and the Radiation seem to have calmed my monkeys down a bit. No more playing whack-a-mole on my head with Nerf baseball bats for them all the time. Or firering random blunt fireworks (aka MI legal ones) inside my brain.
But than they got gloomy. They steal people out of my head! I remember that Enterprise Episode where more and more people from the crew disappeared. And noon seemed to wonder. But I do wonder. I could have sworn there were people around me a second ago who knew exactly what is going on. Someone I could relay on, trust. There was someone running by! Where did he go?? Someone?? Or was that me?
It is so nice and calming here. This wide open white room and this couch look really comfy. Now I remember. I will lay down there and snuggle up in the plush blanket. Nice and warm. Just relax and everything will be fine.
And I am back. Fell asleep during the Eureka Season Finale. One of my many new power naps I drift into randomly during the day. Just another stupid dream. Reed is sitting there smiling at me. He is here. He knows what is going on and what to do. But I am still scared. I don't like to forget stuff. I don't want to loose brain function, brain cells, short term memory and what not. And my head hurts again. This strange pressure on my brain. Time for more meds. Anti seizure and high dose steroids. Those are coming with night sweats, chills, dizzies. Or they are the side effects from what else is going on in my head.
But at least I am awake. I am here. This is my universe! Beat it, Monkeys! There is my cell phone. All these names and numbers in there. They all know me. They are all here for me. And I am thankful. I will hold on to it. I can do this.
Friday, September 3, 2010
Holy Shit.
OK. I am in a little shit here. Kinda in the deep end again. Back to square one. Part B I guess.
There are like 25 (!) brain tumors in my head. Most of them smaller than 1cm. Two big ones on the left and right top side. Many of them in the back but they are pretty much all over the place. How else do you fit 25 tumors in a brain?!? Is there space for a brain left??
So whole brain radiation. I had my second dose today. Good that they already made my mask on Wednesday. Each session is just 10mins long, way shorter and so far easier on me than those 14 chemos.
Oh yeah, I also failed the seizure test. No more driving for me for 6 months. Or some sports alone like swimming for example. I am going to loose my hair again. And my short term memory will go to shit. Expect to be a little slower, it will take you longer to solve your Sudoku, but you will still be able to do it. Sure.. Who forgets numbers 1 to 9?
I think I am done for today. I have to sort and recollect myself I guess. I can do this.
There are like 25 (!) brain tumors in my head. Most of them smaller than 1cm. Two big ones on the left and right top side. Many of them in the back but they are pretty much all over the place. How else do you fit 25 tumors in a brain?!? Is there space for a brain left??
So whole brain radiation. I had my second dose today. Good that they already made my mask on Wednesday. Each session is just 10mins long, way shorter and so far easier on me than those 14 chemos.
Oh yeah, I also failed the seizure test. No more driving for me for 6 months. Or some sports alone like swimming for example. I am going to loose my hair again. And my short term memory will go to shit. Expect to be a little slower, it will take you longer to solve your Sudoku, but you will still be able to do it. Sure.. Who forgets numbers 1 to 9?
I think I am done for today. I have to sort and recollect myself I guess. I can do this.
Thursday, September 2, 2010
More Birdshit.
It is 5:30 am and I can’t sleep. I know now that my cancer spread to my brain. In 3h I will find out what kind of radiation I will get. My new Radiologist will call as soon as he has yesterdays Brain MRI report.
And I just got me a new bike helmet! This was supposed to be the beginning of my recovery time! Already did a 5 and 10 mile ride with Reed. And swam my first km. 45 mins instead of 20 mins but who is counting. I love my new SwiMP3 and lap counter/timer. I needed a new swim suit as my butt got too big for my old ones. Oh well. Cancer just made me a little fatter. The thought about losing weight really bugs me. I weigh more than ever and just 20% of my closet fits. It is really uncomfy to carry that extra weight. I try to eat right and exercising was my cure all.
Will they let me swim?? I should not drive because of the risk for seizures. I most likely had some of those already. At least five little tumors in my brain are responsible. I told Alyson at my last Bras for a Cause meeting (16th of August 2010) that I kinda felt like I had a stroke. Funny, eh? My fingers on my left hand started pulsing and closing to a fist. Than it stayed shut and I could not open it for a couple of seconds. Than all was ‘ok’ again, it just hurt a little bit. My brain felt funny but being German having spoken and listened to too much English does that sometimes to me. No worries there. I got my Herceptin the next day and my nurses were not too alarmed either. Peripheral Neuropathy is not uncommon when you stopped getting chemo a couple of months ago. The nerve in my right pinky did pulse and hurt and went numb before. No big deal there either. Then, on the Saturday, it became a whole different ballgame. It started in my mouth.
The nerve in the middle of my tongue and roof of my mouth pulsed and hurt. And everything tingled in my mouth. It felt like there was water in my throat and I had to swallow a lot. Breathing was fine, better through my noise. So I tried to relax and not panic. Laying on a float in the lake on an awesome sunny day was not going to be interrupted by some stupid nerves recovering from chemo. I was holding on to Reed, my ‘Fels in der Branding’ (Cliff in the surf/solid as a rock), his chair standing next to me in the water. Should I say something? Probably. ‘Are you ok?’ – ‘Nope’ but that just came out as a mumble. Everything is numb as if the dentist went a little overboard with the anesthesia. I pointed to my little finger and made some pulsing action with my hand. Then I pointed to my mouth. Easy enough. Yes, I can breath and will not panic. I just keep floating and try to relax. Everything was over in a minute or two. Another episode at dinner and I told Martina about it. Yes, I will call my Oncologist on Monday morning. I had two more in my left hand and right pinky on Sunday.
Dr. Folbe sent me for a CT scan on Tuesday. I saw him after it at 5pm. ‘Is your husband here?’ (Oh shit..) ‘Yeah, they found something. I will get you in with a Radiologist asap. We will talk tomorrow at 8:30am. Reed should take that day off from work.’
We saw Dr. Vito Antonucci on Wednesday at 1:30pm. I had a facemask done for my first Radiation treatment at 3pm the following day. Depending on the MRI results that I got scheduled for that evening.
Now I am sitting here, drugged up with a high dose Steroids. More Energy, increased appetite, going to be bitching and snapping at people. Fun prospect. Yes, all minor compared to the other issues like dying, permanent brain damage and so on. But I really rather bitch about my pants being too tight right now. Thank you.
Two more hours..
Just created this Blog. It was time. I am German, my spelling is as ok as my spellchecker but my grammar might suck. Deal with it or write me a nice note. One more hour..
And I just got me a new bike helmet! This was supposed to be the beginning of my recovery time! Already did a 5 and 10 mile ride with Reed. And swam my first km. 45 mins instead of 20 mins but who is counting. I love my new SwiMP3 and lap counter/timer. I needed a new swim suit as my butt got too big for my old ones. Oh well. Cancer just made me a little fatter. The thought about losing weight really bugs me. I weigh more than ever and just 20% of my closet fits. It is really uncomfy to carry that extra weight. I try to eat right and exercising was my cure all.
Will they let me swim?? I should not drive because of the risk for seizures. I most likely had some of those already. At least five little tumors in my brain are responsible. I told Alyson at my last Bras for a Cause meeting (16th of August 2010) that I kinda felt like I had a stroke. Funny, eh? My fingers on my left hand started pulsing and closing to a fist. Than it stayed shut and I could not open it for a couple of seconds. Than all was ‘ok’ again, it just hurt a little bit. My brain felt funny but being German having spoken and listened to too much English does that sometimes to me. No worries there. I got my Herceptin the next day and my nurses were not too alarmed either. Peripheral Neuropathy is not uncommon when you stopped getting chemo a couple of months ago. The nerve in my right pinky did pulse and hurt and went numb before. No big deal there either. Then, on the Saturday, it became a whole different ballgame. It started in my mouth.
The nerve in the middle of my tongue and roof of my mouth pulsed and hurt. And everything tingled in my mouth. It felt like there was water in my throat and I had to swallow a lot. Breathing was fine, better through my noise. So I tried to relax and not panic. Laying on a float in the lake on an awesome sunny day was not going to be interrupted by some stupid nerves recovering from chemo. I was holding on to Reed, my ‘Fels in der Branding’ (Cliff in the surf/solid as a rock), his chair standing next to me in the water. Should I say something? Probably. ‘Are you ok?’ – ‘Nope’ but that just came out as a mumble. Everything is numb as if the dentist went a little overboard with the anesthesia. I pointed to my little finger and made some pulsing action with my hand. Then I pointed to my mouth. Easy enough. Yes, I can breath and will not panic. I just keep floating and try to relax. Everything was over in a minute or two. Another episode at dinner and I told Martina about it. Yes, I will call my Oncologist on Monday morning. I had two more in my left hand and right pinky on Sunday.
Dr. Folbe sent me for a CT scan on Tuesday. I saw him after it at 5pm. ‘Is your husband here?’ (Oh shit..) ‘Yeah, they found something. I will get you in with a Radiologist asap. We will talk tomorrow at 8:30am. Reed should take that day off from work.’
We saw Dr. Vito Antonucci on Wednesday at 1:30pm. I had a facemask done for my first Radiation treatment at 3pm the following day. Depending on the MRI results that I got scheduled for that evening.
Now I am sitting here, drugged up with a high dose Steroids. More Energy, increased appetite, going to be bitching and snapping at people. Fun prospect. Yes, all minor compared to the other issues like dying, permanent brain damage and so on. But I really rather bitch about my pants being too tight right now. Thank you.
Two more hours..
Just created this Blog. It was time. I am German, my spelling is as ok as my spellchecker but my grammar might suck. Deal with it or write me a nice note. One more hour..
Me.
On Memorial day 2009 I found a lump in my breast, and obviously it had to be cancer. What a drag. Stage 4 Metastatic Breast Cancer, HER2+.. And as that is not fun enough it has to be a fast growing aggressive one. So it is already in the lymph's, the left lung, the liver, the abdomen and on the spine at a couple of places. The Stage 4 was diagnosed on June 8th in the ER. I had massive pain in the lower rib area and my family doc sent me there after getting the blood results from an earlier test. They kept me in the hospital for a week. After lots of test, a port and my first Chemo/Herceptin treatment, they let me go home a changed person. How bad is it? How long will I live? Is there hope?? When I mentioned "prognosis" everyone just looked rather sad and concerned. "Let's get you through this first round of infusions and than we know more.." with a wary smile.
But THAT is not going to happen to me. It just can't. After a couple of treatments I got some more reassurance other than my own happy state of mind. You can't be seriously ill if you can still laugh at the little things and are mostly in a happy mood. (Ok, ok, sometimes with the help of a little yellow happy pill.. Did I mention there was a "no alcohol clause" with the whole Chemo thing??? So of course I responded pretty good to the Chemo (all my hair is gone which sucks - but I have two awesome wigs) and to the Herceptin (a new med, antibodies for my specific cancer). My Cancer marker went from 1550 in June down to 885,105 and it was 24 in November (Party!! <= 38 is considered "normal"). Also, my last CT scan showed that the cancer is shrinking. The lung is nearly completely free, the liver just has an area of 5x6cm left (it was completely saturated), there is no tumor at the ovary anymore, and there is a positive change on the spine as well.
I just had my 9th round of Chemo, Taxol, Paraplatin and the Herceptin yesterday. With the last three times I had a reaction just after the Para started... red hot head and nausea. However, the nurses are wonderful and the meds they gave me worked. Right now I still feel like a heater and my liver hurts a little bit. "Tiny little monsters are eating my cancer!!!" Other tumors also hurt from time to time. A little scary but the results keep me mostly in a good mood.
My Oncologist says it is still serious and I can just get rid of the cancer with Chemo and Herceptin. It is actually pretty unlikely that I can get rid of the cancer completely. More probable is that it will be kept under control with the meds. I will get the Herceptin indefinitely.
Despite all that has happened, we see everything pretty positive and hope for a complete recession instead of just controlling the cancer. Ha! Screw you, Cancer!!! You picked the wrong - Bitch!!! (Pardon my French)
Update..
After my 14th chemo my doc decided to take me off chemo and just go with Herceptin. That was in May and my first blood test from end of June showed that the cancer marker is still low at 16!!
I am soo happy and getting used to life without chemo again. Going to our fist floor is not taking all out of me anymore and I already went swimming a couple of times! This new Swimp3 player works well.
I love my new hair. Just added some red color and it looks much better than the Grey or dark blond it came out with.
The fund raiser www.brasforacausemichigan.com is going well, we still need some food, auction items and sponsors but we are on the right track.
But THAT is not going to happen to me. It just can't. After a couple of treatments I got some more reassurance other than my own happy state of mind. You can't be seriously ill if you can still laugh at the little things and are mostly in a happy mood. (Ok, ok, sometimes with the help of a little yellow happy pill.. Did I mention there was a "no alcohol clause" with the whole Chemo thing??? So of course I responded pretty good to the Chemo (all my hair is gone which sucks - but I have two awesome wigs) and to the Herceptin (a new med, antibodies for my specific cancer). My Cancer marker went from 1550 in June down to 885,105 and it was 24 in November (Party!! <= 38 is considered "normal"). Also, my last CT scan showed that the cancer is shrinking. The lung is nearly completely free, the liver just has an area of 5x6cm left (it was completely saturated), there is no tumor at the ovary anymore, and there is a positive change on the spine as well.
I just had my 9th round of Chemo, Taxol, Paraplatin and the Herceptin yesterday. With the last three times I had a reaction just after the Para started... red hot head and nausea. However, the nurses are wonderful and the meds they gave me worked. Right now I still feel like a heater and my liver hurts a little bit. "Tiny little monsters are eating my cancer!!!" Other tumors also hurt from time to time. A little scary but the results keep me mostly in a good mood.
My Oncologist says it is still serious and I can just get rid of the cancer with Chemo and Herceptin. It is actually pretty unlikely that I can get rid of the cancer completely. More probable is that it will be kept under control with the meds. I will get the Herceptin indefinitely.
Despite all that has happened, we see everything pretty positive and hope for a complete recession instead of just controlling the cancer. Ha! Screw you, Cancer!!! You picked the wrong - Bitch!!! (Pardon my French)
Update..
After my 14th chemo my doc decided to take me off chemo and just go with Herceptin. That was in May and my first blood test from end of June showed that the cancer marker is still low at 16!!
I am soo happy and getting used to life without chemo again. Going to our fist floor is not taking all out of me anymore and I already went swimming a couple of times! This new Swimp3 player works well.
I love my new hair. Just added some red color and it looks much better than the Grey or dark blond it came out with.
The fund raiser www.brasforacausemichigan.com is going well, we still need some food, auction items and sponsors but we are on the right track.
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