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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.

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.

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.

Saturday, November 19, 2011

Coping Strategies - Stroke

It should be noted I felt I was swimming without arms when I first had the stroke. I was given some geriatric pamphlets about Living With A Stroke. Absolutely not helpful. I called my regular doctor for advice (and honestly in tears and traumatized) and what I remember of that conversation was not necessarily good. I came away with "The beginning of the end" from it. (I should note I am sure she did not specifically say those things, but my ability to hear what she was saying was colored....)
What she did do was get me in to a leading neurologist in Seattle who saw me, switched my medicines that the hospital had given me, corrected the misdiagnosed stroke (the type) and told me I would be almost back to normal in three months.
I got books: Ones with people who survive strokes. And funny books. To keep the levity. Watched alot of
Stress Relief: meditation and therapy. Friends and family.

Wednesday, November 16, 2011

First post.

Okay first off I think it very telling in my description of this blog that I am"managing" doctors, friends, etc etc. I am not managing any of them... they are off doing their own thing and I am just trying to keep up. My regular pre-stroke doctors are all low key and calm and know me... my new neurologists and surgeons are all revved up and fast talking about things that I don't necessarily follow.
I don't know if this is common but I have been very "in my head" of late. Insulating, isolating myself from the present... in a way ignoring that which I cannot ignore. And no, that is not working for me.
Last night I got out of my little shell and went to a gallery opening at Wilder's school. It was the best ever--just to remind me that AGAIN the world is still rolling along full of normal stuff. It helped that everyone was very outgoing and talkative and I love that. I also have to keep in mind that people deal with this sort of crap (tumors, cancer, illness) daily and hourly and by the minute... so I just need to get over my Why Me complex and deal. I have options, I am not dead. Stark reality works well for me. Sometimes. When I am not putting on rose colored glasses and putting my head in the sand.