Traveled to Seattle yesterday for a Stroke Survivors Support Group. I think I am too close to the stroke for a group setting... it may be my mood but the meeting opened my fear door wide to hear endless stories of multiple stroke episodes by so many people. I am not far enough away from it all not to have that nagging feeling of having another stroke at any time. My rational thought says : you are on meds, you eat totally different, you have no stress (other than the ominous threat tumor and stroke), the perfect storm of hormones and whatever that created this mystery is no longer. But my insane side says: I could keel over at any moment. So a group of great people saying my worst nightmare was not helpful.
I was the youngest one in there, and upon entering was asked if I was a caregiver. I said I had a stroke, which pretty much stopped inquiry. If you were in my spinning head, aware of my "drop things" left hand and slightly stumbling left foot trying to find words to string together out of nothingness you would be able to understand. But I guess from outward appearances, I look like a caregiver.
This all being said it was a fantastic group. The spirit in the room was so supportive and positive, and it was a joy to have other people understand having a stroke without the hushed tones and serious faces. Everyone there got it, and there was room for finding your words, or word, and dropping your cane and being allowed the time to pick it up. Where having a stroke was treated as normal -a part of life- and being dealt with by spirited individuals. That is not quite the word I am looking for... but folks with hutzpah. Energy for recovery, research, communication, stick-with-it-ness.
Sunday, January 22, 2012
Wednesday, January 18, 2012
Doctors
My neurologist and my regular doc of 14 years had words. All because my doc put me on fish oil rather that a statin drug that gives me nasty stomach pain. My doctor and her nurse both gave me a call that my neurologist was concerned... my neurologist saying (to my doctor) there could be "dire consequences" if I was not on the statin. My docs reasoning was that my cholesterol is not high, I do not have any narrowing or clogged arteries, that it is being used as a preventative, and fish oil would do the job without the side effects. My neurologist is adamant about me taking aspirin, the statin, and a blood pressure as a deterrent to further strokes since the reason for my stroke is unknown. I am at this time undecided. I think I will take half the statin coupled with fish oil. I hate hate hate the idea of being on drugs the rest of my life, but am doing it because of the "risk of stroke" hanging over my head. And I have been very reliable with my drugs, taking them daily.
Anyone else have this drug cocktail as a preventative?
Anyone else have this drug cocktail as a preventative?
Tuesday, January 10, 2012
Neurologist
I go to my check-up (which is really more of a check-in) with my Seattle neurologist tomorrow, Wednesday. When I first saw him it was about a week after my stroke, and I could not stay awake, or upright.
At that time he switched my meds from the hospital prescribed ones and corrected their misdiagnosis of what type of stroke I had. Also sent me for a different MRI, since he couldn't get accurate detail from their originals.
It is interesting, since he is so hands off. No blood pressure check or med check. He pokes and prods and has me smile to check my left side responsiveness. He tells me I look really thin, and asks if I am eating. Before my stroke, I had not gone to a specialist beyond a dermatologist to check out a mole. Mine is a great listener, but also such a specialist he is intrigued by the unusual. The medically interesting. Like his patients are all fascinating puzzles to be solved. When I tell him my heart feels erratic, he sends me off to the cardiologist. When they find the tumor, he sent me off to the neurosurgeon. I am missing that pull-it-all-together person, it used to be my regular doctor but this is all out of her league. (I think I still harbor a wee bit of resentment because of her response to my pre-stroke series of migraines --she attributed it to menopause, which she did most my physical symptoms. And I will forgive or at least my expectations of perfection from her will subside and become more reasonable again).
My neurologist asks me about my mental state, and tells me that it is normal to need some assistance getting through the emotional side of things... not just the PT, OT, etc. which deal with the physical. I already have a therapist and have added a meditation specialist to quiet the 'worrytalk' part of my brain. I guess this is just part of the healing process. I feel like there are questions I am not asking him, but don't know what they are. How do you all navigate your healthcare professionals? I was taking people with me to take notes and make sure I asked everything I wanted to, which was helpful since I could not ask questions and listen at the same time for a while after the stroke.
Note: It is not truly documented that I ever could really listen and talk at the same time... friends will remind me of all sorts of misspoken sentences and twisted words I used to say before stroke....I even have it documented in a public speaking video. Strangely, that makes me feel loads better!
At that time he switched my meds from the hospital prescribed ones and corrected their misdiagnosis of what type of stroke I had. Also sent me for a different MRI, since he couldn't get accurate detail from their originals.
It is interesting, since he is so hands off. No blood pressure check or med check. He pokes and prods and has me smile to check my left side responsiveness. He tells me I look really thin, and asks if I am eating. Before my stroke, I had not gone to a specialist beyond a dermatologist to check out a mole. Mine is a great listener, but also such a specialist he is intrigued by the unusual. The medically interesting. Like his patients are all fascinating puzzles to be solved. When I tell him my heart feels erratic, he sends me off to the cardiologist. When they find the tumor, he sent me off to the neurosurgeon. I am missing that pull-it-all-together person, it used to be my regular doctor but this is all out of her league. (I think I still harbor a wee bit of resentment because of her response to my pre-stroke series of migraines --she attributed it to menopause, which she did most my physical symptoms. And I will forgive or at least my expectations of perfection from her will subside and become more reasonable again).
My neurologist asks me about my mental state, and tells me that it is normal to need some assistance getting through the emotional side of things... not just the PT, OT, etc. which deal with the physical. I already have a therapist and have added a meditation specialist to quiet the 'worrytalk' part of my brain. I guess this is just part of the healing process. I feel like there are questions I am not asking him, but don't know what they are. How do you all navigate your healthcare professionals? I was taking people with me to take notes and make sure I asked everything I wanted to, which was helpful since I could not ask questions and listen at the same time for a while after the stroke.
Note: It is not truly documented that I ever could really listen and talk at the same time... friends will remind me of all sorts of misspoken sentences and twisted words I used to say before stroke....I even have it documented in a public speaking video. Strangely, that makes me feel loads better!
Thursday, January 5, 2012
Fear
I can be rolling along in my regular life, listening to music, painting the house, brushing the horse, helping the kids with something, and a sneaking feeling comes along that this can all change or be taken away from me in a second. I know the stroke played havoc with my sense of security, my sense of living. I still don't trust my body fully to keep me alive at any given point. This is a natural thing and a natural course to our existence... that at some point we die. My sense of security in my survival was not a reality, it is the nature of a finite life and lifespan that there is an end. I am sure this will get easier the further I get away from my stroke, but sometimes it is an unbearable weight to carry. It is probably why I stay so busy, the tricky thing is that fear usually comes out in some other way.
Thursday, December 15, 2011
Gamma knife procedure radiation - details
I should have said this surgery I am having is the lowest risk surgery you can have. And there is the chance that it will totally killing the tumor. I chickened out on the whole cutting my head open and physically taking it out -- there are risks associated with that -- and am doing the concentrated radiation directly at the tumor. They can still go in at a later date if it continues growing and take it out. I have had enough inside the head trauma for one year.
The day surgery was from 7:15 to 2pm. I had three doctors and a nurse. First the nurse checked me in, had me sign off on paperwork, and put the iv in place.
The doctor came in late... around 8:20 to put on the head frame. This was the most ridiculously painful part of the whole day... and only because of the shots which was lidocaine under my scalp in four areas. And then they basically screwed four nails into my scalp. You really don't want your head moving in any way for maximum accuracy of the radiation. I didn't want my head moving either (!), so didn't really have a problem with it.
Then I was off to the MRI machine for an up-to-the-minute scan of my tumor, then another hour wait while the physicist and neuro radiosurgeon came up with a specific plan for my tumor. Then my neurosurgeon came down again to approve the plan and I was whisked into the radiation room. They locked my head piece into the machine, and my body was on a floating table. I would think this would be a challenge for large or individuals with a neck injury, since your head is slowly moved in and out of the machine, as the radiation machine adjusts around your head. It's like your head is being pulled slowly around by four pins in your skull, and your body follows. I could feel my spine compress and then elongate as I was pulled in and out. The key is it was all done so slowly, no jerking. The loudest point was when my headpiece snapped into place after every adjustment of the laser, probably a dozen times. I brought a couple cd's which were a lifesaver, I could get lost in the music while in the machine, it was all very zen. Probably the drugs, but I liked being in there, it was quiet, and easy to transport mentally to quiet spots. Now that I reread this, I definitely think it is the drugs!
You cannot be claustrophobic in any way, you are put in something that looks like a box about 6 inches from your face. Everyone is out of the room due to the radiation, and each session was 4 to 16 minutes long. At the end of each session, there was a three tone pattern that let me know I was getting another adjustment. The room and machine are wired so I just needed to clear my throat and they would talk to me. For me, the procedure was an hour and a half. They can be 15 minutes to three hours, so I was average.
At one point, the pain from the pin at the back of my head was excruciating, I told them in the middle of a zapping, and they stopped the machine and administer pain medication. That was a bit too strong for me... my head was spinning, the room doubled up, and I felt like my brain was separating from my body. I wouldn't let me put me back in the machine until my body calmed down and adjusted to the medicine. One thing though, my pain was gone! Then I got nauseous from the medicine, and they had to administer an anti-nausea medicine.
When I was done, I had to lay around and let my stomach settle. I ate a couple crackers and that seemed to help.
My friend who drove me was able to stay through the whole thing, and when things got painful she was there. At one point she even flashed the neurosurgeon a dirty look when he talked about a time someone put on the head brace wrong and their brain stem was zapped instead of the tumor. NOT what you should be talking about before a patient does a surgery on a tumor touching the brain stem.
When done, I was back at the hotel, walked through the lobby to my room. No nausea, no dizziness.
The tumor had its DNA scrambled and will now slowly die over the next 3-6 months. It will not disappear, but turn to scar tissue. I will get an MRI then to see what the result is.
I am glad it is over, and going to enjoy Christmas, my family and friends very much this year.
The day surgery was from 7:15 to 2pm. I had three doctors and a nurse. First the nurse checked me in, had me sign off on paperwork, and put the iv in place.
The doctor came in late... around 8:20 to put on the head frame. This was the most ridiculously painful part of the whole day... and only because of the shots which was lidocaine under my scalp in four areas. And then they basically screwed four nails into my scalp. You really don't want your head moving in any way for maximum accuracy of the radiation. I didn't want my head moving either (!), so didn't really have a problem with it.
Then I was off to the MRI machine for an up-to-the-minute scan of my tumor, then another hour wait while the physicist and neuro radiosurgeon came up with a specific plan for my tumor. Then my neurosurgeon came down again to approve the plan and I was whisked into the radiation room. They locked my head piece into the machine, and my body was on a floating table. I would think this would be a challenge for large or individuals with a neck injury, since your head is slowly moved in and out of the machine, as the radiation machine adjusts around your head. It's like your head is being pulled slowly around by four pins in your skull, and your body follows. I could feel my spine compress and then elongate as I was pulled in and out. The key is it was all done so slowly, no jerking. The loudest point was when my headpiece snapped into place after every adjustment of the laser, probably a dozen times. I brought a couple cd's which were a lifesaver, I could get lost in the music while in the machine, it was all very zen. Probably the drugs, but I liked being in there, it was quiet, and easy to transport mentally to quiet spots. Now that I reread this, I definitely think it is the drugs!
You cannot be claustrophobic in any way, you are put in something that looks like a box about 6 inches from your face. Everyone is out of the room due to the radiation, and each session was 4 to 16 minutes long. At the end of each session, there was a three tone pattern that let me know I was getting another adjustment. The room and machine are wired so I just needed to clear my throat and they would talk to me. For me, the procedure was an hour and a half. They can be 15 minutes to three hours, so I was average.
At one point, the pain from the pin at the back of my head was excruciating, I told them in the middle of a zapping, and they stopped the machine and administer pain medication. That was a bit too strong for me... my head was spinning, the room doubled up, and I felt like my brain was separating from my body. I wouldn't let me put me back in the machine until my body calmed down and adjusted to the medicine. One thing though, my pain was gone! Then I got nauseous from the medicine, and they had to administer an anti-nausea medicine.
When I was done, I had to lay around and let my stomach settle. I ate a couple crackers and that seemed to help.
My friend who drove me was able to stay through the whole thing, and when things got painful she was there. At one point she even flashed the neurosurgeon a dirty look when he talked about a time someone put on the head brace wrong and their brain stem was zapped instead of the tumor. NOT what you should be talking about before a patient does a surgery on a tumor touching the brain stem.
When done, I was back at the hotel, walked through the lobby to my room. No nausea, no dizziness.
The tumor had its DNA scrambled and will now slowly die over the next 3-6 months. It will not disappear, but turn to scar tissue. I will get an MRI then to see what the result is.
I am glad it is over, and going to enjoy Christmas, my family and friends very much this year.
Tuesday, December 13, 2011
Friends who can deal with illness, and those who can't
It has been somewhat of a shock for me to see how my friends handle my newfound medical challenges. I have to say, I would have been a friend that didn't know what to do and became all awkward had one of them gotten sick first. Maybe that is a lesson for me, I now am so much more amenable to calmly facing body calamity in others. I can comfortably say that before when confronted with life threatening illness in others I did not know what to do and frequently overthought what I should do, what I could do for someone. Now I just know to be there. To check in. Call. And listen. It is funny the people I thought would be there through thick and thin are not, and others materialized from acquaintances into strong allies. I am not grumpy to lose my friends through this, I am just glad others stepped into the void. I didn't really lose them, they just are not there firmly in place as before. They are there in recognition that they should be as a friend, but not there because they want to be. And truth be told, I miss them. You realize the role you play in any relationship if you cannot hold up your end of the traditional friendship for a while and the whole thing changes. Everyone is left a bit adrift... since you have to redefine what it is you do for each other. The problem with being competent is when you are not.
This is more just a wistful meandering thought, not a written in stone treatise. My friends are still present and accounted for and if I threw a hissy fit would be there for me in a minute. I just don't have the energy or temperament right now for one of those.
This is more just a wistful meandering thought, not a written in stone treatise. My friends are still present and accounted for and if I threw a hissy fit would be there for me in a minute. I just don't have the energy or temperament right now for one of those.
Tumor Radiation Therapy
My tumor is a meningioma. Attached to the lining of my brain, but not the brain itself. It is a large grape size, and pressed tightly against my brain stem with my hearing and balance nerves running near it.
That is the risk of the Gamma Knife surgery, that those nerves will be harmed. I am at the point of not being able to take in information. I feel this is a major fail on my part- the woman who does research on the best toenail clippers of 2011-- and I can't even research this surgery beyond the cursory. I am going to trust my doctors. They have no idea what a big deal that is for me.
I have all my xmas shopping done, the tree up. Today and tomorrow are for cleaning the house and putting the lights up outside. The next day is surgery prep and surgery. I am going with the "I will be fine" tagline.
My therapist recommended I write notes to each of my kids in case something happens. You have no idea how that made me cry, but she was right. Since I am a major procrastinator the tendency is to obviously put it off, but I cannot. I wrote little notes, but really, how can you write something as if you will never say it again? I know I was missing crucial parts but I guess it is what it is.
I also started going to a mindfulness therapist- which is meditation- my favorite part about that is when she starts talking calmly her small fluffy dog sacks out next to her and starts snoring. Her skills even work on dogs.
The gamma knife will kill the tumor, turn it into scar tissue. If it is fast growing it will come back. If it is malignant (very small small chance) it will come back. But there is a high probability it will stop it altogether.
Strangely enough, I am in a happy place right now. My stroke effects are minimal other than memory and odd left side awareness issues. I have people coming out of the woodwork to support my family, and this stubborn independent woman is learning to graciously receive help as it is offered.
That is the risk of the Gamma Knife surgery, that those nerves will be harmed. I am at the point of not being able to take in information. I feel this is a major fail on my part- the woman who does research on the best toenail clippers of 2011-- and I can't even research this surgery beyond the cursory. I am going to trust my doctors. They have no idea what a big deal that is for me.
I have all my xmas shopping done, the tree up. Today and tomorrow are for cleaning the house and putting the lights up outside. The next day is surgery prep and surgery. I am going with the "I will be fine" tagline.
My therapist recommended I write notes to each of my kids in case something happens. You have no idea how that made me cry, but she was right. Since I am a major procrastinator the tendency is to obviously put it off, but I cannot. I wrote little notes, but really, how can you write something as if you will never say it again? I know I was missing crucial parts but I guess it is what it is.
I also started going to a mindfulness therapist- which is meditation- my favorite part about that is when she starts talking calmly her small fluffy dog sacks out next to her and starts snoring. Her skills even work on dogs.
The gamma knife will kill the tumor, turn it into scar tissue. If it is fast growing it will come back. If it is malignant (very small small chance) it will come back. But there is a high probability it will stop it altogether.
Strangely enough, I am in a happy place right now. My stroke effects are minimal other than memory and odd left side awareness issues. I have people coming out of the woodwork to support my family, and this stubborn independent woman is learning to graciously receive help as it is offered.
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