A friend of mine who is also a cancer survivor has turned his experience into a mission to help others. Last week he asked me for my story in 1500 words or less. I ended up writing an 1100 word story and starting a much longer more detailed one.

http://www.voicesofsurvivors.com/Voices_of_Survivors/Written_Word/Entries/2009/5/21_A_Survivor_Story_by_Ginny_Striewig.html

This fueled my continued writing in prep for my book. I have always said I was going to write one, but didn't know where to start. thanks, Lynn for providing my start. Today I was able to start an outline which can easily be turned in to a table of contents. That was after hand writing 13 pages of important stuff. I decided that if I didn't figure out what goes where before I added more pages, I would never figure it out. Now I can take each subject at my leisure and know where to paste it once I type it all into Word. Then I can pour through my blog for other things to paste in.

I don't know how long this obsession will last, so I am taking full advantage of it while it lasts. It is flowing better hand writing it - perhaps it's more like painting or drawing that way which makes it feel more real to me, more connected to me somehow.

No news is good news; no more seizures, work is good, still finding balance, but was able to shut everything out and take Friday off to try to recouperate from pushing myself too hard since March. Things are still on the upswing and will continue to be. If I don't write here, you will know what I'm up to.

Dealing with fatigue levels suck. But, I now have a system. I know that I cannot go from one thing to another without having some down time. I can't go eat lunch, then go straight from there to an event or a place that requires any sort of paying attention or walking for extended periods of time. I can't go from one job to another without 2 hours of rest. I am not always afforded the opportunity to do this, but I do my best. It involves a great deal of skill in scheduling and being disciplined in following the plan. It also involved more hours in a day than I have available to me. And I am up before 8am every morning.

Not complaining (much). I know that there are others out there dealing with brain stuff and this same issue, so I thought I would share my experience in case they are also having difficulty. We brain injured people need to stick together. We can all learn things from each other. I missed the brain tumor networking group on Monday because I was busy doing other things (that involved making money). I now know that I must keep this appointment from now on on the 2nd Monday of each month at 1pm. I really missed chatting with my brain tumor friends. I learn from them and they learn from me. I also give them hope as I am thriving in spite of "the big C." Most of them have also had surgery and are dealing with the after effects of traumatic brain injury. It's good for them to see that it does get better with time and effort. Emphasis on the effort (at least for me). It took me 3 years to be confident enough with my skills to go out and get an outside job (outside the family business where they won't/can't fire you). I am having a blast doing it. Even though it's not really challenging work, it is wonderful for me emotionally. I am helping others to do their jobs better and faster. There is a great sense of accomplishment that I am enjoying completely.

That's why I don't complain (much). I am happy with what I am doing. Sometimes I screw up and schedule too many things in one day. That's part of my learning process - learning my limits. I feel that if I don't push the envelope now and then, I will never know if/when I am better. I know that I am getting better, but the progress is so slow and sometimes so minute that it's difficult to see. I am happy in the moment and enjoy each day. Every day there is something to remind me how happy I am in my life, what I have achieved and why I am a survivor.

I forgot to add that for the huge Animal Disaster Drill happening on May 16th in Irvine, I have been assigned the Exotics and Reptiles Manager of the shelter. I report to the Shelter Manager. :) Should be fun. Hope someone brings their pets to the drill.

Thrilled the freaking Spring concert is over with. Not thrilled I had a seizure right before the first song of the 2nd half. It was so bloody hot up there - I barely made it to intermission, then had to add a piece of clothing (colored scarf) for the 2nd half. I was on stage all of 30 seconds before things went haywire. I tried yoga breathing and letting myself just relax...nothing was working so when it came it got me pretty good. Face pulling to the left...not as much drool as previous ones, though. I guess I can count that as good. The few I've had this month have been much milder than this one, but all of them have lasted longer. Weird. Kinda thought I was done this month cuz once I added Mg of Lamictil to the morning dose, I stopped having them. I'm not upping it again. I'm sure this one was stress, heat and stress. Black Polyester and stage lighting are a BAD combo for anyone, let alone someone with a titanium skull and electrical problems.

Trying to focus on core dumping all of the Latin stuck in my brain. My niece is currently hospitalized trying desperately not to have her baby boy who isn't due until July. They finally managed to stop the contractions, whew. That was after giving her an epidural last night which temporarily paralyzed her. The poor girl. I just want to scoop her up in my arms and tell her everything is going to be ok. Ya, she's 29 now, but she'll always be 3 to me. The will not let her move a muscle. She is very uncomfortable, so they are trying to figure out what's going on. Hmmmm...perhaps cuz she's been chained to a hospital bed for more than 24 hours in one position??? Our family is a bit stressed to say the least. My issues just complicate things for everyone. Shit, and a litany of other not so nice words, on a stick, even.

Normally "no news is good news" applies to my blog. Not so much this time. I had a seizure on 4/4, then more throughout the next week. I had been feeling buzzing in my lips and shooting pain in my left eye, but since I've gone more than 6 months without a seizure, I didn't think much of it until BLAM! I've even forgotten how to have one - I was used to just relaxing and letting it happen because they end more quickly that way. Now I am fighting them again, which makes them last longer. Ack. I added another 100mg of Lamictil in the morinings and it seems to have taken care of the situation. At least I went more than 6 months this time. Perhaps next time it will be 9 months, a year, or forever. Who knows. One of the theories about the cause of seizures is that when they are in your brain poking around they bump up against the motor strip causing irritation. The brain fights back hard when it gets irritated. Go figure. So, at the brain tumor conference last Fri/Sat Jim asked several doctors if that motor strip ever calms down causing the seizures to stop. Every single one of them was stumped. "Hmmmm, that's a really good question - we may have to study that."  Ya, guess who will be involved in THAT study.

So, while I am disappointed that I had more seizures, I am confident that things are getting better.

I am having a ball working at King's Hawaiian. They are extremely nice folk. I haven't lost my typing or 10 key by touch skills and they are being used for everyone's benefit. I am still volunteering at the Marsh and still a personal assistant to a friend. I am still trying to figure out a reasonable schedule (balance) in which to get all of this done without overtaxing my own physical resources. I start back to dance practice this week after more than a month off due to an injury. The choral's Spring concert is 4/25, so once that's through I am taking a much needed break. I need my Monday nights back for a while. I've decided not to participate in the 4th of July concert this year. Last year I sang and did ADT duty patrolling the park for dogs. It was a bit much. With everything else new I have going on, I am going to back off a bit and take a summer break from chorale. I don't want to be around when they all fly off to Europe in July anyway - too depressing that I cannot join them. I'm hoping that in 2 years when they decide to travel again I can manage to save some cash from my $9/hr jobs to attempt to travel with them. $2700 for Europe I just couldn't manage. Especially since I didn't even start earning money until March this year.

And no, I'm not talking about the friend that I lost to colon cancer last week. Ugh. I did my "survivor's guilt" thing and I'm now back on track. So exhausted, but I know that if I don't start writing now, I'm going to lose all the details and that would suck.

Wed - woke up to excruciating pain in my right ear. It is not ear related, but TMJ related. The disc on that side of my jaw at age 21 was damaged beyond repair and stuck in a place it should not have been. I can only imagine what coniditon it's in twenty*cough* years later. I probably have bone on bone going on in there. I know I've been hearing more pops and cracks the past couple of months than I have since I got my braces off at age 27. Anyhow. Fortunately, since I have had so much physical therapy on that part, I know how to deal with it and have been doing exercises to keep it under control (I hope). I wasn't able to make it to yoga class Wed morning - just too weary. My fatigue level is at an all-time high right now with trying to find the balance between all the work I have going. Went to King's at 11am, got the tour of the bakery and offices, started working right away. Great work for me. The hand written sheets that I am putting into excel match their excel sheet perfectly and I ten key by touch so I never have to take my eyes off the page. I can tell when I type a wrong key without looking, then I can look up at the screen and fix it without removing my finger from the page so I never lose my place. It feels productive even though it's very easy work. It's obvious that it's a huge help to them as no one there has the time or types as quickly as I do. They are all very nice and the company is very gracious about food and drinks at the restaurant. My brother is already bugging me about when he gets to take advantage of my new perks ;) I only worked until 12:45pm so I could get to my individual session at The Wellness Community by 1pm. No parking, as usual, so I was late. Damnit, I hate being late! Went straight from there to the Neurologist. He was very happy with my MRI results and happy with no seizures for 6 months. He sent me off for a blood test to check my Lamictil levels - if they are good he will take me off the Topamax for good! WOO HOO! AKA Dopamax. Another one bites the dust! One less medication is ALWAYS a good thing. From there I went to take care of some personal assistant duties, which I was far too exhausted to do justice to. Couldn't keep track of some of the details. Forgot to pick up something...not the end of the world, but frustrating for both of us most likely.

This morning I dragged myself to the Marsh only to get a nasty mouse bite. No, it wasn't Dot. We picked up 4 small feeder mice because Sheba the King snake was so hungry she struck at the water when I was pouring it into her bowl. We finally got the top for her new tank and will deal with that next week if it hasn't been taken care of before that. There are only 2 people who take her out of her cage. Me, and Daniel. Now that she's eaten, someone else can do it, but no one will volunteer. Chickens! So, we put a feeder mouse in Scooby's cage (the gopher snake), but he decided he wasn't hungry and went and hid from it. When I went to pluck the mouse back out of the cage, it clenched onto my left index finger and would not let go. Little bastard! I yelled "Ouch!" apparently loud enough for everyone in the offices to hear me and worry. Someone said "uh-oh." and I replied "No, it's just the mouse." They all knew I was over monkeying around with both snakes and I knew their first thought was that one of them bit me. I was scheduled to have lunch with Kathy, but she called and had to cancel due to work issues. That ended up being a good thing. I really needed my 2 hour break and actually took 3 hours today because I've been so fatigued. Yes, I am trying to do too much. What a shocker, I know. I am trying to figure out how to rearrange things so I get proper breaks during the day. It is going to take me a few weeks to figure that out. And while I figure it out, I'm going to pay for not having it figured out, which motivates me to figure it out faster. After my break, went to Jim's and now am home to crash, nurse the jaw (does ice cream count as icing the jaw?) and the finger, and rest. No reading for me even though I really want to. Need to just stop for several hours.

A little after 6pm I was notified that I am now officially personal assistant to a good friend of mine (i.e. I will now get paid for doing the things that I already do for and with her), not more than 30 minutes later my cell phone rang with news that I have some part-time temp work available at King's through another dear friend of mine and the temp agency she referred me to. Both of these put together are still well under the $700/mo SSD radar, so I can keep my precious benefits (and my house) as well as supplement my poor excuse for an income. Direct Deposits to my checking account bi-monthly and everything. Wow! officially employed twice over! With this money I will be able to pay for my car insurance, my prescription drug plan and my medicare supplimental plan - wheeeeeeeeeeeeeeeeeeeee! Which means I will no longer have to "borrow" money from the home equity line of credit in order to break even. Hopefully I can even throw some more money into the joint account to cover more of the household expenses, which has been a real sore spot for me since I had to stop working. I can't stand not being able to support myself. But I can't stand even more that someone else has to take care of me AND I can't flip in enough money to take care of my fair share. Ack. I still won't be able to (and likely won't ever be able to), but at least I will have something to work with so that I am not such a burden. And no, Jim would never call me that. He has been wonderful and would support me working or not. This is just something that I need to do for myself. Ok, and for us because eventually we will run out of money altogether and we have no backup for that.

So there, now I am retired and have 2 jobs! I am now even with my brother who is 10 years my senior. Perhaps when I am 65 (that is when the $700 radar will no longer exist) I will go out and get 3 more just like my father did.  Feeling good. A bit of apprehension, but only due to having to carefully plan out these hours and rearrange my current schedule. I don't want to lose any hours at the Marsh. I can't afford to lose any at Jim's, but there won't be any work for me there beginning May anyway. I know I will make mistakes along the way - I will try to schedule too much at once and exhaust myself, then learn where I have to cut back. It's inevitable. It's a cycle I go through. It's a learning process. It's really the only way to figure out how much I can do. Trial and error. It's a sucky way to learn, but sometimes it's the only way. But, hell, now that I can't dance for several weeks, I can use that time/energy for something else. I have torn a muscle in my calf. Not pulled, not strained, I have a 2 finger wide TEAR in the muscle that I can feel through the skin. OW! so I have been hobbling around with a cane since a week ago last Wed. Yes, I should be on crutches, but I can't get anything done that way. I have had to do a lot of personal assisting this week and I need to be able to use my hands (or at least one). Lucky for me it's my left leg so I can still drive. Of course, that means the cane is in my right hand leaving my left hand to do all the work and I have this nagging bone spur in my left shoulder that I refuse to have surgically removed for a second time. Ah, well. We all muddle through somehow. I finally quit my Wed night cancer group now that I've been out of treament for 19 months. The brain tumor networking group is now meeting twice a month on Monday afternoons which will allow more people to come and doesn't interfere with anything else (well, it didn't, lets hope I can keep it that way).

Ok, I'm trying to input that I'm listening to Museum's Lost album, but it's not listed...Michael! WTF! You own this thing and your music isn't even listed??? You so need to fix that.

Today is day 150, I get to stop counting, though I have lost count many times since the last entry. I only know that today is 150 because it was in my calendar. It's been a tough couple of weeks, ending (hopefully) in a horrific day yesterday. Putting the smack down on a dear friend is not a fun thing. Fortunately, I think it will turn out ok. I hope it will. I want this person in my life. There are just some issues that need to be resolved. So, after I did that, I was off to the Wellness Community for an individual session that I had scheduled because the return to work limitations thing was bothering me so much. I of course ended up talking about the unresolved issues with this friend instead because it was much more in the forefront of what is going on in my life. Also in this past 2 weeks a friend (and brother of a close friend) was diagnosed with colo-rectal cancer. The father of another dear friend was diagnosed with prostate cancer. What a joy to have a president who wants to make finding a cure for cancer in our time a priority. We are so close. I am certain that if it becomes a priority for everyone, it will happen. I must to the Marsh so more later. 

I had to leave the house before my house before my housekeeper was finished so I was unable to let Blue indoors. When I ran home after my individual session to eat dinner for 5 min I did not see her running around the house, but it didn't occur to me that she was still outside. Off I went to group from 6 to 8, then straight to dance practice. The last figure of the last dance (of course) I was learning I went to dance across the set and when I set my left foot down I heard and felt a rubber band type snap. Ow, ow, ow. I doubt it's a tendon because I can still move my foot up and down. Hurts, but it moves. Last week I got what felt like a bad charliehorse in the same spot and it had just worked itself out (mostly) that morning. I could not stand on my tiptoes, but who really needs to do that? After ice and Reiki it felt a little better, but walking was/is a bitch. I iced it from 2am to 3am this morning. Walking from my car to the nature center it started to feel a bit better. I'm pretty sure I didn't do any major damage, we'll see as time passes.

Cabin Boy was nice enough to meet me for coffee afterward even though he had to be in early today. He made a point of it since I was having such an awful day. Too sweet, that one.

I promise I'll stop counting at around 150, but until then...deal.

I had my "3 month" MRI today at the request of UCLA. Dr Ullman doesn't think I need them that often, UCLA prefers to be more "diligent" about the whole process. I think it's a load of crap. 6 months is plenty often enough for a tumor of my type that we weren't going to treat in the first place. Whatever. Since they no longer cost me $350 in co-pay, I went ahead and made them happy. My last one was 9/17 anyway. They (the MRI's) are just such an annoyance. The scheduling. The removal of jewelry that I NEVER take off (except for MRI day), the filling out 3 forms every time (which are the exact same form - why is it after 3 years you still don't know where and what type of metal is in my body and that I don't have renal disease or diabetes or stents and that I do have tattoos? Then there is the insurance ordeal, which also hasn't changed since 6/1/08, but I have to give them my cards every visit anyway. The verifying of my personal info,address, phone number, etc... The wait. The earlugs, getting shoved into a tube, sometimes with my head taped down before they put a cage over it. Then being shot up with a substance they are not allowed to touch with their bare hands because it is to toxic. Then trying to get said toxic substance out of my system before it causes a seizure. Getting all of the semi permanent jewelry back on...just annoying. And it was raining today and Torrance Blvd is all torn up with construction. Ack. And all of this on to of my feeling "stuck" in the Disability system. I suppose it's  good thing that no one else showed up tonight for the Brain Tumor Networking Group. It gave me the opportunity to talk to the Therapist one-on -one for an hour and vent. I asked him for a form to sign up for a few individual sessions since I flipped off 3 people today (though they did deserve it for putting my life in danger on the road). I feel like I'm on steroids again. Stay the F out of my way!

And still counting! Woot! Officially beat my longest record! So, I think I can safely say that the Lamictil is working. The Micronor also seems to be working since January 2009 was the first month since brain surgery that I did not have my period twice. What a relief!

My call to Social Security regarding trying to go back to work took the wind out of my sails a bit. Not just for myself, but for anyone in my postion (and there are lots of them). If I work for 9 months within a 5 year period and making over $700/mo, my Disability benefits will be suspended. At that point I am allowed to continue on Medicare for 93 months if I pay the premiums. In a nutshell this means that if I am offered and take the City job I will make $1300/mo and have to pay taxes as well as insuance premiums out of it ($97 for part A&B hospital & dr's, $37 for part D Prescription). I currently get $1573 from Disability and that's AFTER parts AB and D have been taken out. So, I can take a pay cut and eventually end up uninsured, or I can not go back to work, or I can try to get someone to hire me and make less than $700/mo (which would not count toward the 9 month restriction). This makes no sense to me. No wonder people cheat the system constantly. I don't condone it and I wouldn't do it myself, but now I understand how people can get in the mindset that it's their only option. The system is broken. Just because I can put in a few hours does not mean I can support myself financially, or that I'm not disabled. I will never be able to work enough hours to qualifiy for benefits through an employer. I need to keep my Medicare. So, what choices do I really have? Stay disabled, or clean toilets for a living? Have you people seen my resume? The City was already grilling me about why I applied for a $16/hr position when my experience was so obviously higher level than what they were looking for. I ran a bi-coastal company for 6 years for crap's sake. I can't do that anymore. That in itself is a disability. Why can't I continue to get the money that I paid into the system since I was 14 years old when I need it? I cannot make sense of this. And the woman on the phone kept saying things like, "Isn't that great? It's a good progam, isn't it?" Um, not if you were making $65,000/yr before you had your head cracked open it's not. Once again I am stuck in that inbetween place. Not sick enough to get help, but too sick to support myself. ARGH! I need to help eliminate all of these inbetween places for myself and others.

My Dot experiment at the Marsh is working so far. Dot greeted me enthusiastically this morning. She is so tame now that when I put my hand in the cage, she runs right up it to see me. She sat in my palm with her eyes closed in complete bliss as I scratched her behind the ears. The blue dot was pretty faded, so I darkened it up a bit. I guess I will have to do that every day I see her. Small price to pay to keep her safe. Some a-hole dumped a guinea pig in the Marsh on Saturday. She is the sweetest little thing. There are already 2 people interested in adopting her, thank goodness.  Can't wait til a couple of months after Easter when people start dumping the Easter bunnies they bought carelessly for their children (who should not be allowed anywhere near bunnies). People are stupid. And these are the same people who have multiple children. WTF???

I took Bunny Blue to my ADT meeting tonight. She was the special VIP guest star. She was very patient as I carried her around the room for everyone to pet. She sat in her pen and played with her toys until it was her time to be introduced. She is just too cute. Our new Lieutenant has 2 bunnies himself, so he spent a good chunk of time with her. I got chastised for not completing my certificates (my online disaster courses). I have tried twice and the test quesions are not in the same format as the study guide so I can't make sense of it. Everything is written in different tenses and the info is all mixed up. I can't seem to put it right in my head in order to answer the test questions. I hope that one of the classes comes up on a weekend when I'm in town so I can get help and finish them all at once. There was a class last September, but I am out of town every single weekend of August, September and October.

Better save this one before it gets lost or turns into a book.

Here I sit moments before I have to leave for my first job interview since 2001. Nervous, yes, but not completely freaked out. I know I won't come off as nervous and I'm not having one of my "off" days where the words just don't come out. Regardless of the outcome, this is a good exerience for me - getting back on the horse so to speak. Even if I don't come out of it with  job, I will come out with a learning experience that I can take into other interviews. And since this one is in front of a panel of 3, all subsequent interviews should be a piece of cake.

The little mouse at the Marsh has 2 temporary friends (lunch and dinner) so I was trying to figure out a way to mark her so that others could tell her apart from the food so she does not get traumatized by the snake again. I finally grabbed a blue sharpie and put a dot on her back (hopefully where she can't reach to groom herself). So now my little mouse friend has a name (Dot) and everyone can tell which mouse to leave in the cage. She is the easiest mouse to catch since we take her out all the time, so she is easy prey. Dot's cage now says "Dot is not food!" in blue sharpie. Hope it works!

Will post again afer the interview...

Whew, glad that's over. One of the interviewers had a problem downstairs he had to deal with so it ended up being a panel of 2. Yay. Turns out the position is more of a management type supervising a staff of 4-5. Of course, I interviewed as if that was exciting to me, but I'm not really sure how I feel about it. I was looking to be just a cog in a wheel. Come in, do my work, go home and not think about work. Not get to know a staff, figure out what makes them tick, schedule them, motivate them, organize them based on their strengths and weaknesses...all the things I am good at. But am I really interested?  Hmmmm...the results should be interesting. I doubt they will get many applicants with my extensive background and experience. No one with my qualifications is going to want to make $16/hr. They asked me about that as well - that my experience seems to be much higher level than what we are asking for - are you going to be challenged enough??? Yes! My work/life balance was off, I had a health issue that threw me off my career track and I am good with that. I want to be a cog in a wheel, not the engine that makes the wheel turn. I do not want to run anyone's business for them anymore. I am not interested in working at that high a level any more. I didn't mention that I likely CAN'T work at that level anymore. Aside from that, I truely don't WANT to. I don't want the stress, the people calling me at home on my day off, or on my vacations (or in the hospital when I'm in ICU), or taking work home, or working 50 hour weeks, or any of it. It's not worth the money. I don't want to give up any of the life I have built since I stopped working myself to death either. So, 20 hours a week is a good thing.