So chemo sux. I assume all of you know the rep chemo has.
But what they don't put emphasis on is teeth well they mentioned it but I did not heed them I had other things on my mind, like surviving.
Any way dry mouth is crappy side effect. I have to have a second root canal on Tuesday. Bledsoe said "This one is on the house because you have so much on your plate" Of all the things to get for free... I don't like tools put in my mouth.
So word of warning to others. Take care of your teeth before you start chemo because once you start having problems and go to the dentist it is already too little too late.
Wednesday, October 27, 2010
Friday, October 15, 2010
happy and afraid
If you have this disease you can relate. Even though I had a clean (dormant tumor cells) MRI I can't help but have a twinge o anxiety when I get a headache. Not only that, but I have a bone crushing wave of terror wash through me when I get a Sudden BAD headache. Am I foolish to want another MRI now? I mean in the beginning it grew 50% in a month 1 month and I had to have major surgery quickly so I would not die.
I cannot wrap my head around this. They changed my meds and Pam says I have PTSD from the experience. She says it is normal but that doesn't stop me from being scared out of my mind.
I am home with the dogs all day long. Yesterday I slept for 20 hrs. That scares me because the One thing everyone who has dealt with this disease has said is when it grows and hits something vital in your brain you will start sleeping ALOT. I am so tired all the time. The doctors are hopeful that snarla will stay dormant forever, but that is simply a good front to make me feel better about actively dying.
To those of you that are used to me being cheery and funny in this blog I am deeply sorry. This is how I feel and I have to get it out otherwise I will stew on it and eventually crack.
I have been thinking about people in my past from Ky and Ga and I am sorry to say that I am deeply ashamed of how I acted. I never had any self control and I pissed people off all the time because I was angry about mom. Dad said when I was little I would find out what someone HATED and do it over and over again until they gave up on me. Now I really need support and I don't easily accept it because I was raised to never take anything from anyone. Connie V tried to break me of this...unsuccessfully. I don't mean to shun you for being nice to me. It is just that I am so used to criticism. When I was diagnosed with this everyone changed their tune. A 180 and it confused me.
I am working on not telling everyone everything. I am just now realizing it is massively inappropriate.
Bottom line I am terrified that snarla will wake up and quickly take me out quickly. I wish she was on the right side of my brain. But she is nasty and mean as a snake.
I cannot wrap my head around this. They changed my meds and Pam says I have PTSD from the experience. She says it is normal but that doesn't stop me from being scared out of my mind.
I am home with the dogs all day long. Yesterday I slept for 20 hrs. That scares me because the One thing everyone who has dealt with this disease has said is when it grows and hits something vital in your brain you will start sleeping ALOT. I am so tired all the time. The doctors are hopeful that snarla will stay dormant forever, but that is simply a good front to make me feel better about actively dying.
To those of you that are used to me being cheery and funny in this blog I am deeply sorry. This is how I feel and I have to get it out otherwise I will stew on it and eventually crack.
I have been thinking about people in my past from Ky and Ga and I am sorry to say that I am deeply ashamed of how I acted. I never had any self control and I pissed people off all the time because I was angry about mom. Dad said when I was little I would find out what someone HATED and do it over and over again until they gave up on me. Now I really need support and I don't easily accept it because I was raised to never take anything from anyone. Connie V tried to break me of this...unsuccessfully. I don't mean to shun you for being nice to me. It is just that I am so used to criticism. When I was diagnosed with this everyone changed their tune. A 180 and it confused me.
I am working on not telling everyone everything. I am just now realizing it is massively inappropriate.
Bottom line I am terrified that snarla will wake up and quickly take me out quickly. I wish she was on the right side of my brain. But she is nasty and mean as a snake.
Thursday, September 30, 2010
I am going to have "OOPS" on my tomb stone....
So fellow cancer fans...
I went to the dentist today and she fit my with a bite splint Unfortunately it is cutting my lip. After that was my first workout. Then I came home and took my chemo.....wait for it....
Then they called and told me that my platelets are low 76. OOPS
Well whatever doesn't kill you makes you stronger.
Anyway, I have been writing this blog as a guide to other cancer patients as to how it feels to actively go thru cancer. If anyone else got brain cancer and they went thru what I went thru and this guide helps them even a little bit better about having this terminal disease, then I have accomplished my goal.
Teresa was always asking me "What message are you trying to convey?" Well Teresa above is your answer.
I spoke with my friend of over 13 years and I still care deeply for Daniel m, we saved each others lives when we were 16.
My husband and sisters and assorted other people have been invaluable to me during this exp. And I am a changed woman if you think I am inspirational take a good long look in the mirror. You are my inspiration and support and I thank you for standing by me.
Love you all, and barring an act of higher power I will be here for years to come.
I went to the dentist today and she fit my with a bite splint Unfortunately it is cutting my lip. After that was my first workout. Then I came home and took my chemo.....wait for it....
Then they called and told me that my platelets are low 76. OOPS
Well whatever doesn't kill you makes you stronger.
Anyway, I have been writing this blog as a guide to other cancer patients as to how it feels to actively go thru cancer. If anyone else got brain cancer and they went thru what I went thru and this guide helps them even a little bit better about having this terminal disease, then I have accomplished my goal.
Teresa was always asking me "What message are you trying to convey?" Well Teresa above is your answer.
I spoke with my friend of over 13 years and I still care deeply for Daniel m, we saved each others lives when we were 16.
My husband and sisters and assorted other people have been invaluable to me during this exp. And I am a changed woman if you think I am inspirational take a good long look in the mirror. You are my inspiration and support and I thank you for standing by me.
Love you all, and barring an act of higher power I will be here for years to come.
Tuesday, September 21, 2010
News
To everyone that has supported us in the Brain Tumor Walk....THANK YOU!!!!!
So yesterday I saw my oncologist and she said that the edema has gone gone down enough to allow them the see the scar tissue and DORMANT cancer cells. Mike was angry when I told him about the cancer cells and I attempted to explain they are dormant. He was in no mood to hear it bc he is irked about something else, anyway he called Vanessa and she alleviated his fears and clarified the information for him.
He thought they got it ALL out and I told him that it was On TOP of my movement center so they couldn't possibly have re-sectioned the entire thing, otherwise I would be bedridden unable to speak or do absolutely anything for myself. He says what is afraid of is it coming back more aggressive and resistant to treatment and I will leave this world. I told him that WILL happen there is No avoiding it, the only thing we can do is make the most of our time here together. We hope it doesn't come back for years as in plural we would like to have at least 1 year with no tumor worries. Is that so much to ask?
It isn't me that is worried or scared or any other negative emotion. I am simply waiting.
My motto: Expect the worst and hope for the best. (That way you cannot be disappointed)
So yesterday I saw my oncologist and she said that the edema has gone gone down enough to allow them the see the scar tissue and DORMANT cancer cells. Mike was angry when I told him about the cancer cells and I attempted to explain they are dormant. He was in no mood to hear it bc he is irked about something else, anyway he called Vanessa and she alleviated his fears and clarified the information for him.
He thought they got it ALL out and I told him that it was On TOP of my movement center so they couldn't possibly have re-sectioned the entire thing, otherwise I would be bedridden unable to speak or do absolutely anything for myself. He says what is afraid of is it coming back more aggressive and resistant to treatment and I will leave this world. I told him that WILL happen there is No avoiding it, the only thing we can do is make the most of our time here together. We hope it doesn't come back for years as in plural we would like to have at least 1 year with no tumor worries. Is that so much to ask?
It isn't me that is worried or scared or any other negative emotion. I am simply waiting.
My motto: Expect the worst and hope for the best. (That way you cannot be disappointed)
Monday, August 30, 2010
New View
Hello again to all of you that are following me,
So Michael and I were discussing what is different from before the surgery: here is what we came up with
The night terrors are GONE, bye-bye, poof
I no longer wake up in the middle of the night screaming or crying or striking out viciously as if to ward of some unseen assailant. Gone are the nights of nightmares about my previous life before the surgery. While Snarla was a resident she gave me night terrors I believe they started '01. You see actually '01 she (Snarla) started to grow which in turn started to affect me and my behavior. But it was so so slow growing and such subtle changes that doctors misdiagnosed me with all sorts of different psychiatric disorder however 1 single thing was consistent: ADHD SEVERE HYPERACTIVTY. Why did they not do an MRI? Because I had one....when I was 8.
Instead of shying away from touch I appreciate it.
Those two things have majorly changed my life and outlook on life. I have been reading Dr. Elisabeth Kubler-Ross, World Renowned Thanatologist (Expert on the dying process) she states a dying person needs touch to stay alive to give them a reason to fight like hell to survive. It is a fact that infants need to hear their mother breathing and caring touch to grow into a happy, mentally healthy child. I am warming up to hugging and being hugged in return.
I like finding out peoples life stories and learning from them. I enjoy putting those lessons to work.
I will never forget this: There was a Jamaican Nurse while I was at MD ANDERSON, she was on nights. She was my favorite nurse because she reached out to me like none of the other nurses did.
For example: one night she heard me crying, I did not call her, she came in anyway just to see what was going on,and if there was anything wrong. There was a guy on HOUSE having a seizure and I was bawling because I know exactly how painful that type of seizure is. It frightened me to my very core. She comforted me and stayed with me until I calmed down; which was was a considerable amt of time for a nurse to stay with a patient. She told me stories, which I partly learned to speak from. She spoke about how lucky I am to have Michael. She spoke of her home and her kids and all about her life. I, as a patient was honored that she chose to share this information with me. Mind you, this stay was over Thanksgiving so she was on duty and missed thanksgiving dinner with her family. That Thanksgiving I was thankful to have her to lean on.
People in hospitals need to take a step out of their roles as doctors and nurses to be sympathetic or empathetic to the patient. That is what Nurse Jamaica did even visitors were allowed and especially when no visitors were allowed.
I am planning to put everything that I have learned through cancer and my whole life toward hospice or hospital patients.
So Michael and I were discussing what is different from before the surgery: here is what we came up with
The night terrors are GONE, bye-bye, poof
I no longer wake up in the middle of the night screaming or crying or striking out viciously as if to ward of some unseen assailant. Gone are the nights of nightmares about my previous life before the surgery. While Snarla was a resident she gave me night terrors I believe they started '01. You see actually '01 she (Snarla) started to grow which in turn started to affect me and my behavior. But it was so so slow growing and such subtle changes that doctors misdiagnosed me with all sorts of different psychiatric disorder however 1 single thing was consistent: ADHD SEVERE HYPERACTIVTY. Why did they not do an MRI? Because I had one....when I was 8.
Instead of shying away from touch I appreciate it.
Those two things have majorly changed my life and outlook on life. I have been reading Dr. Elisabeth Kubler-Ross, World Renowned Thanatologist (Expert on the dying process) she states a dying person needs touch to stay alive to give them a reason to fight like hell to survive. It is a fact that infants need to hear their mother breathing and caring touch to grow into a happy, mentally healthy child. I am warming up to hugging and being hugged in return.
I like finding out peoples life stories and learning from them. I enjoy putting those lessons to work.
I will never forget this: There was a Jamaican Nurse while I was at MD ANDERSON, she was on nights. She was my favorite nurse because she reached out to me like none of the other nurses did.
For example: one night she heard me crying, I did not call her, she came in anyway just to see what was going on,and if there was anything wrong. There was a guy on HOUSE having a seizure and I was bawling because I know exactly how painful that type of seizure is. It frightened me to my very core. She comforted me and stayed with me until I calmed down; which was was a considerable amt of time for a nurse to stay with a patient. She told me stories, which I partly learned to speak from. She spoke about how lucky I am to have Michael. She spoke of her home and her kids and all about her life. I, as a patient was honored that she chose to share this information with me. Mind you, this stay was over Thanksgiving so she was on duty and missed thanksgiving dinner with her family. That Thanksgiving I was thankful to have her to lean on.
People in hospitals need to take a step out of their roles as doctors and nurses to be sympathetic or empathetic to the patient. That is what Nurse Jamaica did even visitors were allowed and especially when no visitors were allowed.
I am planning to put everything that I have learned through cancer and my whole life toward hospice or hospital patients.
Sunday, July 25, 2010
just trying to get the word out......
Michael, Amy, Laura C, and I have created a team for the DFW Brain Tumor Walk at Trinity Park in Ft. Worth (http://www.
If you can't do it, no problem. I'll be contacting you for a donation later.
Take care,
Mike
- Be willing to raise at least $350 in donations from friends, family, and co-workers.
- Pay a $50 registration fee (not sure if this counts to the donation goal).
- Put up a personal web page (if you want).
- Show up at Trinity Park on November 6th, between 8 and 9 am, rain or shine.
- Walk 5k (or not, you don't have to) and enjoy the festivities afterward.
- If you can't make it but you still want to be a part of the team, you can become a Virtual Walker (all the responsibilities, but no walking).
If you can't do it, no problem. I'll be contacting you for a donation later.
Take care,
Mike
Tuesday, July 13, 2010
sweet Freedom
SO today I made it 29. I could not have done it without the prayers and positive vibes being sent my way. I would also like to thank The Most loving, supportive, dependable husband in the entire world. Michael If it weren't for you....... You know the rest.
SO when Dr fink told me I should sign up for a driving evaluation I forgot to ask if I could ride a bike. I called the Driving evaluation place and it will be on sept 26. I just called and asked if I could ride a bike and they said it was up to us and as long as I can balance and wear a helmet. The guy that did my physical therapy said I had better balance than any other patient he had seen. And since I have accepted the fact that I won't be able to drive now, I am glad. That gives Teresa and I enough time to get me ready to drive.
The point is that My Husband and I are going to purchase a bike for my birthday!! I feel like a child, getting so enthusiastic about a bike but it will allow me to get some freedom.
Anyway My next MRI is the 24th and I meet with Dr. Fink the following Monday. SO I will keep you posted!
SO when Dr fink told me I should sign up for a driving evaluation I forgot to ask if I could ride a bike. I called the Driving evaluation place and it will be on sept 26. I just called and asked if I could ride a bike and they said it was up to us and as long as I can balance and wear a helmet. The guy that did my physical therapy said I had better balance than any other patient he had seen. And since I have accepted the fact that I won't be able to drive now, I am glad. That gives Teresa and I enough time to get me ready to drive.
The point is that My Husband and I are going to purchase a bike for my birthday!! I feel like a child, getting so enthusiastic about a bike but it will allow me to get some freedom.
Anyway My next MRI is the 24th and I meet with Dr. Fink the following Monday. SO I will keep you posted!
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