Saturday, December 12, 2009

IHSS Decision

I won! Was there ever any doubt? YES...
I was totally stressing on this situation,
so glad I won, and that it is over!

Saturday, December 5, 2009


why haven't I gotten a decision yet??
I am beyond frustrated on this.
On 12/01, they mailed me all my original documents that I had presented
at the hearing. That was sent to me by the supervising social worker that represented the county, and was present at the hearing. In that correspondence, she included her business hours and her phone number. So yesterday, first thing in the morning, I called her, got her voice mail and left a detailed message, inquiring about the status of my appeal.
I left my phone number, Geos phone number, and my email address. Did she reply?
Hell no! wtf? Wtf did she bother to give me her contact info...?
Like I said, I am beyond frustrated.
No mail tmw, it is Sunday.
Maybe Monday....cross your fingers!

Wednesday, November 25, 2009

Hearing Results....

Get this, no decision! They will mail me the decision ;-(
The judge read all the letters (the evidence of my disabilities, etc)
OUT LOUD including my statement letter,
this included 2 doctors letters.
Then he asked Geo for a verbal statement, then Lema, (my provider/friend)
then me....
The whole thing was kinda overwhelming, draining, humbling.
It was hard to hear the descriptions of my day to day challenges.
Kinda like when you catch your screwed up NF2 reflection in the mirror,
and your like " that me?" ugh....
Remember I thought my GP doc didnt say the 'right' thing about my limitations?
Turns out, she never replied to their 2 faxes at all. wtf? what an idiot....
They did provide CART, it was my 1st time with CART and it was cooool.
(the CART lady was hot too ;-))
I still think im going to win, I just wanted the decision right then!
But the judge will decide the case today, and stick it in the mail
(yay! just in time for holiday delays...not)
Happy Thanksgiving everyone.

Thursday, November 12, 2009


IHSS = In Home Supportive Services.
This is a program paid for by the state, for disabled people.
I have received IHSS for a few years. A provider comes to my home,
once a week, for a couple hours, and helps me do housework and other things around the house, that I cannot do, because of my limitations. For instance, my balance and visual impairments, make it impossible for me to vacuum or mop, dust the higher shelves, clean the slippery tile shower, etc. IHSS has been a great help to me.
Suddenly, the state has decided that I am no longer eligible for IHSS services. They made this decision without my having seen a doctor at all. I am appealing the decision. My state hearing is November 25th. I am gathering as much info as possible, to bring to the hearing, to 'back up' the fact that I do have limitations.
I can do plenty of physical stuff, for instance: mowing the lawn - no problem. It is not a hell of a lot different than pushing a shopping cart around, in fact its easier, you don't have to contend with people and aisles full of (breakable) objects.
Changing the oil in a car - no problem, you are laying down to do it, so you can't possibly lose your balance and fall over. It requires loosening ONE bolt, which is positioned in a spot where you can't really see it anyhow, so you kinda gotta do it by braille ;-)
But take moping the kitchen floor: once I'm all done, it looks great, TO ME! But if I get down on my hands and knees, where I can bring the floor into focus, I see I missed all kinds of crap, in fact I just made mud. Same thing when I try to clean the shower. Or vacuum.
I wrote a letter, requesting CART for communication at the hearing. It is the law. They have to provide it. I am not sure exactly how to enforce that, but I am not going to just 'settle'. So I got my hearing date notice, it is Nov. 25th, there was no mention of the CART I requested, so we will see how that goes. Oh yeah, a footnote on the letter they sent me:
"If you have trouble understanding English, an interpreter will be provided." hello?
What about us late deafened AMERICANS who speak English?? This is going to be interesting...wish me luck ;-)

Tuesday, October 6, 2009

I told ya so...

My Cancer has been in remission for 6 months now,
I went to see Dr. Zu today (my oncologist) and he was happy
to tell me, I'm still in remission! (I already knew that, but it was nice to hear it)
There is no trace of the Cancer in my blood work.
"Everything looks great, see ya in 6 months."
Life is good.

In other news, I joined the study, here is the link to read about it:
Today I mailed my most recent MRI's, family history, a summary of my nf2 experience, etc.

Sunday, September 27, 2009

Good qoute....

Forget traditions! Forget conventionalism!
Forget if the world will say weather you're in your place or not in your place.
Stand up and be counted.
Do your thing, looking only to God (whoever your God may be)
and your conscience for approval.
~ S. Crisholm

Thursday, August 6, 2009

Never again...

Yesterday I had the nerve conduction study.
OH. MY. GOSH. It was horrible.
You guys warned me,
but I honestly thought all your warnings were exaggerations.
It was barbaric, like something out of the dark ages.
Never, again.
After wards the doctor told me "both arms have nerve damage"
well no shit! I went thru all that, just to learn that??
I already knew that!
He also said that he did not see any specific reason for my pain,
but that it is likely due to NF2. (duh!)
I was hoping for an "oh, there is the culprit, and here is how we fix it" that was not to be tho. He will send the results of test to HEI,
for Dr. Slattery to review.
Meanwhile, like I said, never, ever again.

Wednesday, July 22, 2009

...dem bones

The appt went good as far as communication and stuff
and Dr. Chapman and his staff were really nice. He gave me a pretty thorough examination BUT he did not do the dang nerve conduction study.
He said "he needs to know exactly what he is looking for" so i go back to see him on Aug.5th, for the nerve test. Meanwhile i guess he is going to contact
Dr. Slattery...?
He did tell me what the lump/protrusion is....
it is the edge of my scapulae bone. No idea why it is that way tho ;-(

Thursday, July 16, 2009


I got the report from yesterdays BP MRI,
"Findings: no evidence of" blah blah blah.
(that sentence repeats numerous times)
"Conclusion: Negative examination."
WTF? I mean that is great that it is all clear,
but it does not explain my problem.
(or the freaking painful lump at my shoulder area)
And it does not bring me any closer to a solution.
So I am confused as ever now.

Tuesday, July 14, 2009

I go for that correct MRI, of my brachial plexus tomorrow.
Here is hoping thet get it right this time, and I can get to the bottom of the issues with my shoulder.
Then next week, I go for the nerve conduction study. Never had one of those, I'm curious as to what it will entail.
Stay tuned ;-)

Tuesday, June 30, 2009


I had the MRI (June 11th) that Dr. Slattery wanted. I just saw the written report and I am frustrated...the report mentions my chest, my abdomen and my pelvis.
There is NO mention anywhere on the report of my brachial plexus, which is what Dr. Slattery wanted scanned. It is also the area where I have problems. I think my (coff-coff) GP Dr. Shein, ordered the scan wrong. She ordered a "chest mri". I get to wait, while the correct scan is ordered, and redo the entire thing.
Thats no bigger, its just an MRI. The part that pisses me off, is the waiting....I have been trying to get my shoulder problem attended to for months now....meanwhile,
whatever is going on in there is getting worse, hurting worse.
I was worried about needing some kind of surgery,
and losing function, but at this rate I hope I don't lose function before
I even get the problem diagnosed.Whatever...

Saturday, May 30, 2009

Marathon time!

Tomorrow is the San Diego Rock n Roll marathon.
My friend Danny will be running in it with the
CTF NF Endurance team,
to raise money for funding for NF research.
He will be running the full marathon, that is 26 miles!
Very impressive!
We plan to go watch him run, and support him, at various spots along the race course.
Here is a link to his page:
Tonight there will be a pasta dinner, for all the CTF runners and supporters.
Meanwhile, GO DANNY!

Friday, April 24, 2009

who needs it?

Monday, the 27th I go for a very small surgery.
It is an outpatient procedure.
Not a big deal at all. The plan is to remove my Port.
Why remove it? Right now I have to go get it "flushed out" every 3 weeks. As much as I like visiting the therapy dogs at the cancer center, they can just become a memory. A distant memory. The mental aspect of this is cool, "no port? wow, I really AM in remission."
I wonder if they will let me keep the port after they remove it? You know, I could bring it to show & tell ;-)

Monday, April 6, 2009

Life is Good...

Dr. Slattery reviewed my MRI films with his team:

“The meningioma appears to be slowly increasing in size, but I do not see anything that we need to do at this time to treat it. We can continue to monitor the meningioma. If it continues to grow at some point in time we are going to need to treat it, but I think we can continue to monitor it at this time.

As far as your arm weakness, I would suggest you have an MRI scan of the brachial plexus and a nerve conduction study. These would both be performed by a neurologist. I want to make sure there is not something that a brachial plexus or nerves to the arm that could be causing this problem. Please arrange for the study to be performed and forward the results to me.”

So that is good. No surgery, yay!

Tomorrow I go see Dr. Zu, to discuss the results from my most recent PET scan.

This is just to check on the status of my cancer. Did I mention I am in remission?!)

Thursday, March 12, 2009

The Good - The Bad - and The Ugly!

The Good:
Yesterday, Steve Otto, my audiologist, tested me for the
Freedom BTE (behind the ear) ABI processor, and my program supports it!
This is exciting! It would mean I'd be wireless, and the entire device sits behind my ear, like a traditional hearing aid.
The best part will be not having to deal with the huge ABI processor I have now. (picture a deck of cards - only a little bigger)
Not only that, but I would have 4 different hearing programs mapped into it. With my current ABI, I only have 2 programs.
I got to walk around HEI, wearing it, to test it out, it was great!
Unfortunately, I had to give it back to Steve before I left. He is such a tease! Hopefully my insurance will cover the upgrade to the Freedom BTE, wish me luck.

The Bad:
Dr. Slattery said that the
in my brain, has shown some growth, and needs to come out. This is not a new tumor. We already knew it was there. (left upper side) He thinks the growth it has shown is the culprit behind the problems I have been experiencing with my left arm. He wants to look further at my films and discuss my case with his team, before we make any decisions on how to proceed. I will hear from him in about 2 weeks.
So, thats a bummer but it could be worse. Stay tuned.....

The Ugly:
My current ABI processor! ;-)

(Today was my 4th and final round of chemo. Treatment was uneventful - that is a good thing. Now I embark on the steriod rollar coaster. That ride should last a few days, and then I'm done, forever I hope. Remember? I'm in remission baby!)

Thursday, February 26, 2009

Mind Over Matter...?

I had my routine yearly MRI of my brain and spine the other day.
In March I will go to HEI for Dr. Slattery to review the scans.
Hopefully, he will say that everything is stable, but I will be very
surprised if my spine tumors have not grown.

Something is going on back there,
and has been for a few months.
When sleeping, I lay on my right side,
and my left arm falls asleep. All the time!
Also, there is this constant....ache in the area of my right shoulder blade.
I say 'ache' for the lack of a better word. It doesn't hurt,
I'm not in pain, I am just aware of this sensation that is foreign.
When I turn my head to the side, mostly the right side, I get this burning sensation that travels down my neck to my shoulder blade area.
It is more annoying than anything else.

You got to understand though, I am weird about pain.
If i don't see blood, scrapes, bruises or some other obvious trauma,
then it doesn't really hurt.

Wednesday, February 11, 2009


OK, yesterday I was due to start 4 rounds/weeks
of chemo, but it was rescheduled until the 18th, next Wednesday.
All they did yesterday, was draw blood for testing,
and I had an appointment with Dr. Zu, my oncologist.
When I was dx'ed with Lymphoma Cancer (5/17/07)
I was in stage 4, there is no stage 5, stage 4 is as extreme as it gets.
Well, guess what? According to Dr. Zu,
I am in remission!
(I will still do the 4 weeks of chemo, to maintain the remission status)
It was my understanding, that Lymphoma doesn't really have a remission stage, but it is not evident in my system. It is dormant!
Dr. Zu said "I am reluctant to say you are cured, as many patients do relapse in the future, right now you are in remission."
Are you kidding? I'll take it! So my cancer is sleeping,
and so are my NF2 tumors etc.
Sweet dreams everyone!

Friday, January 23, 2009

MRI/PET Scan results...

My MRI results.....
The thing on my thigh proved to just be a shadow!
I am clean!
I will go for 4 rounds of chemo,
starting Feb.10th.
That is 1 day a week, for 4 weeks.
It is just for maintenance, not for anything new.
I have to do that every 6 months. (minimum)
It has not been quite 6 months yet since my last chemo treatment.
The timeline and the dosage of my chemo treatments,
is determined by the results of blood tests, etc.
So....February 10th.....bring it on! ;-)
There is 1 part of the chemo that I am dreading.
After the 1st infusion of chemo, I will be on steroids for 3 days.
That will repeat, for 4 weeks....ugh...
I think I dread the steroids as much or more, as i dread the chemo.
And it will be like a roller coaster. On again, off again, for 4 weeks.
It is usually decadron or prednisone.
Both suck.
Some times neither one is included in my treatments.
What the medical reason that the steroids are part of the cocktail?
I have no idea...
and it is really irrelevant,
if Dr. Zu (my oncologist) says I need it,
that is good enough for me.
He has my utmost respect.

Tuesday, January 6, 2009


So tmw I am going for an MRI,
ordered by Dr. Zu, my oncologist,
so we can see the 'new' growth on my right thigh.
I can't feel or see it at all.
Dr. Zu won't speculate on what
it may or may not be.
Stay tuned.....