SO BE IT....

Day #10

2012-01-28T16:19:00.000-08:00

Doing good. Today is day #10 of me not smoking.
The absolute hardest time, when I really crave one, is after dinner.
After any meal I want one, but dinner is the hardest. My new addiction:
Yogurt covered raisins ;-) Very yummy, and I don't have to step outside to have one.
Monday night, I will sleep over at the Baumanns house, and then bright and
early Tuesday, we head to the airport, for our annual visit to NIH. It will be me, Craig & Garrett Baumann traveling together. Wednesday & Thursday will be MRI's, etc. I have an appt in the vision clinic, I hope I can talk the eye doc into updating my glasses prescription.
Craig & Garrett will head home Thursday night. I will be admitted to the hospital for surgery Friday. Don't worry, it is a minor surgery. Dr. A is going to remove this annoying, bothersome tumor on the inside of my wrist. Geo arrives Friday evening; they have a room reserved for him at the Safra family lodge, on the NIH campus. I heard it is nice, anybody been there?
If everything goes smooth (it will) I will be discharged Saturday, and we shall fly home. See ya next week ;-)

More on Zyban

2012-01-08T16:44:00.000-08:00

So, my cigarette cut off date is January 19th.
I'm just supposed to taper off until then,
since I can't/haven't/or-just-wont go the cold turkey route.
I'm doing well on that, today I have had 1 and 1/2 of a smoke.
It's evening, normally at this time of day, I've had 8 or more.
Breaking my own personal rule,
"assume nothing, question everything", I allowed
myself to be under the assumption that this Zyban drug
has Nicotine in it.....makes sense right?
WRONG! It has zero nicotine in it. Zip. Nada. Ziltch.
It is an anti-depressant! They use it in non-smoking programs,
to curb the irritability, depression, frustration, etc., etc.,
that people trying to quit experience.
Ok....how is an anti-depressant going to help
me quit? Won't this just be going cold turkey,
with the giggles?? WTF?
When I got the Rx, the pharmacy told me,
"you really can not drink with this medication".
Well I know that! You aren't supposed to drink
while taking ANY medication. You know I
always do, I drink a minimum of 2 beers a night
but usually much more, regardless of whatever med I am on.
Yes I know, but spare me the lecture,
I'm just being honest, even if it does reveal my weaknessess.
ANYWAY....they are serious, you really
can not drink with this med.
Friday night I drank maybe 5 beers,
and woke up Saturday morning with a horrible headache,
the chills, and my whole body was sore.
(don't say hangover, that is a joke, I have to drink WAY
more than that to get anywhere near a hangover)
That lasted all day Saturday, and then I could not sleep.
Now, Sunday evening, the headache is gone,
but my body still feels really sore.
One of the listed side effects are "Flu-like" symptoms.
Good description. Clearly, the alcohol enhanced that.
And today my Zyban dosage doubles.
Wonderful.
No more beer? Maybe I will have 1 beer,
just 1, before I go to bed.

ZYBAN

2012-01-06T12:54:00.000-08:00

I start Zyban yesterday, it is a smoking cessation drug.
Before my insurance would approve the rx, I had to show proof
that I am participating in a smokers-cessation-support-group.
So I joined a phone support group. Hello?
A PHONE support group?? Anyone else see the humor there?
Actually, my program counselor seems pretty cool.
So far I have had one 30 minute session with her.
Geo answered the phone, and gave her a brief tutorial
on the Captioned Telephone, now she is a pro at it,
and we have another session this coming Tuesday.
Wish me luck on this journey!

Happy New Year - 2012

2011-12-31T22:21:00.000-08:00

Wow! 2012! Where has the time gone??
I am 44 years old.
In New Years of the past, I have always wished for
happiness, wealth, prosperity, success or some material thing that I coveted.
Hands down, there is no greater gift than Good Health.
(it only took me 44 years to "get" this lol)
If you have good health, any of the other things I mentioned, are more attainable.
Happy New Year everyone, and I wish you, and myself, Good Health for 2012!

Inconclusive (hate that word!)

2011-11-23T12:00:00.000-08:00

It all started with a routine PAP smear,
in which the gynecologist noted that the Lymph node
glands in my neck, were "grossly enlarged".
(not good for a person with Lymphoma -
even if it is in remission)
So, Dr. Zu, my oncologist, ordered a PET scan,
to see the status of my cancer.
(PLEASE don't be back Cancer, I do not want you here!)
The PET Scan was inconclusive. WTF?!
Dr. Zu is "not convinced the cancer is back" BUT
is "concerned about my enlarged lymph nodes"
He said we will give it a month or 2, and if the swelling still exists
He wants me to have a biopsy ;-(

OG GATHERING 2011

2011-11-05T10:22:00.001-07:00

October, 2011 OUR TRIP TO OHIO
Oct. 6th - Thursday:
Our journey started from the San Diego airport, to Ft. Worth, TX; where we changed planes, and met up with Jodi Berlin! The 3 of us (Me, Geo & Jodi) sat together on the next flight, bringing us into Ohio. Party in the sky!
Thursday evening:
The Lees' picked uo Geo & I at the airport, and took us to their home, where we would stay the night. We gathered around the table for a nice homecooked meal. Present were;
Steve, Phyllis, Mary Davis, Mike Pupa, Jamie P, Marie Drew and last but not least, Fuji!
(The very friendly family cat - Meow!)
Friday noon:
Quite a few of us were already here.
We had a pizza lunch in the Drury dining room, and then set up the conference room. Setting up the conference room was a blast! There were 10 volunteers, with assigned tasks. Everyone worked together to decorate the room, and give it that "International flair", which was the theme of the OG this year. Working side by side with fellow NF2'ers was empowering and left me feeling very accomplished, and the OG had not even begun yet!
Conference room highlights:
The Map:
A large map of the USA, with map tacks denoting all the different states people at the OG hail from. As people arrive, they "tack" their home on the map. Cool!
The Memorial Board:
A display with all the names, many pictures, and hand written sentiments for the fallen NF2'ers, draped with Butterfly lights ;-)
The Quilt:
On display, was the quilt. What quilt you ask? I think it was about 2005 that many crewbies participated in making/decorating squares of material, and Carol Winarski (Winny)
sewed them all together to create a beautiful quilt! We then raffled it off, with the proceeds going to Advocure. The Swafford family won the raffle, and brought the quilt for display.
(thank you, I was dying to see the quilt!)
OFFICIAL OHIO GATHERING 2011 START
5 pm - Friday evening:
Crewbies started showing up!
5:30 we all gathered for an informal free hot dinner in the hotel dining room.
(gotta love FREE)
As people finished their meals, they meandered back over to the conference room, for reuniting with old friends, making new friends, and catching up. It was sooo kick back! relaxing, to just hang out and visit with NF2'ers.
Plenty of hugs to go around!
7:30 - Friday night - eating contest!
This was a feeding frenzie of chocolatte pudding and whipped cream, with a $25 prepaid visa card as the prize! It was fun and messy!! Teams of 2 competed, the teams were: Me & Geo, Steve & Mike P, Heather & Claudia, Tracey S & (son) Kierman, Beth H & Brenda C, Kim M & Kathy. Geo & I won, but it was close, Heather & Claudia almost had us! I will refrain from telling you what that much pudding does to a guy!
After the contest, the conference room was a buzz with NF2'ers mingling, socializing, and just hanging out with each other. Lots of laughter, many hugs, and much love filled the room.
Saturday Morning 9:00am:
Our group ate breakfast in the Drury. We pretty much took over the dining room,
for more free food! And more new faces as people were STILL arriving!
(For the following events, C.A.R.T. was provided.)
We had a memorial for Rachelle Swafford. Many people spoke of her. It was a celebration of her life, it was heartbreaking yet uplifting. Her parents and her sister and brother in law were there. A $260 donation was contributed
to CTF, from us, in Rachelle's name.
Dr. Welling, from Ohio State, gave a presentation focusing on drug therapies, etc.
He had slides to show us but was unable to, as there were technical difficulties with the equiptment. He took questions from various people in the audience, and answered in laymans terms. (english!) His presentation was very informative.He seems to be a very nice and funny man!
Saturday lunch:
Most of us caravaned over to Chipotles; a deaf friendly Mexican Grill, close by. Again, I think our group pretty much took over the place. How often are "normal" folk the minority, while NF2'ers rule the majority! So cool!
Saturday 1pm-4pm:
Half the conference room was set up as a theator area where many people watched a captioned movie. The movie was RIO. I did not watch the movie, but I did munch on the pop corn!
During the movie, I spent my time in the other half of the conference room, just shooting the breeze and visiting with different friends.
Saturday - 4:15 Hot Tub
Jimmy Jackson, Doug, Me & Geo, Jodi, Mary, Katie, Shanna, Mike P, Megan, and a few others, whose names I am surely forgetting, hit the hot tub! It was fun! Jimmy said it had been "20 years since he went in a tub", this will make for a classic memory.
Saturday Supper - 6pm
Dinner was in the conference room, and was catered, and was delish!
After dinner a pinata was placed in the center of every table, where people could whack it, while remaining seated. (NF2 friendly style)
We had a dress Jimmy contest, where people brought different, kooky items to dress Jimmy in; like weird hats etc. Again there will be some classic memories from that. Jimmy is a good sport!
Group photos! People had been snapping pictures the entire weekend, but this was a chance for the whole group to pose together for our group shot. I had not realized until that moment just how many we were! This was a huge turnout!
Breakdown: 30 PEOPLE WITH NF2, 24 PEOPLE WITHOUT NF2
for a total of 54 ATTENDEES, including 10 volunteers.
States represented: PA, UT, OH, MI, TX, CA, FL, SC, IN, MO, TN, NY, MS, KY, NJ
Saturday late night:
The conference room closed at 10pm, and most people called it a day, and retired to their rooms. A group of about 10 of us "die hards" wanted the party to continue!!
So we ended up across the street at a local sports bar, where we sat outside in the patio area (which, again, we took over lol) It was fun!
Sunday Morning:
Another hot, free breakfast surrounded by NF'ers! Can't beat that - I want to do this every morning! I love this hotel! It has a great open dining room, and breakfast is served buffet style, all you can eat, and did I mention it is free? The conference room adjoins the dining room, so you don't have to trek through a huge hotel (hello MGM) to get there, it is just next door. Very cool and very accessable.
Sunday - 10 am-10:30:
Devotional led by Clay & Gladys Bell, in the conference room. This was a gathering of
about 25 people for prayer, sharing, and unity. I did not attend, so I can't relay the details of it. I was on the other side of the room, entrenched in conversation, I could see the Devotional group tho, and it was apparent that they were thanking The Lord for the many blessings we share.
Sunday - Farewell Everyone:
The conference room would be closing by noon, and most attendees would be rushing off to the airport, or embarking on the road. Is the OG really ending? Is it really time to say "good bye"? This weekend went by way too fast, I was just getting started ;-)
This was my 1st Ohio Gathering, the first of many I hope. As a veteren of many NF2 "cons", I must say, this was the best NF2 event I have EVER attended. Hands down - no contest. The entire weekend was relaxing and so laid back. The backdrop; The Drury Hotel, was absolutely perfect for us. I am already pestering Geo about next years Gathering, I hope we are lucky enough to attend.
Saying good bye is so hard. It is bittersweet. I refuse to say good bye, I will just say
"see you later". A qoute from Jimmy Jackson, which says it all,
"I need these Gatherings, you guys are my rock." I agree, I'm pretty sure we all do.
After the Gathering:
Jodi, Mary and I, hung out at The Lee's house, while Steve, Geo & Mike P, were breaking down the conference room. Phyllis was playing "taxi", driving people to the airport, which later, included Jodi. So Mary and I hung out and visited. Kind of ironic, because I "met" Mary online in an NF chat room (mostly NF1 people) back in 2002 or 3. I was already a Crew member but I had not spoken to anyone; she "introduced" me to Jimmy and the AIM chatrooms, and the rest is history. So it was great to meet Mary face to face, after all these years!
Sunday Night Supper at Roosters:
Steve & Phyllis, Me & Geo, Jamie P, Marie Drew, Shanna, Sylvia, Mary & Earl,
all got together for dinner and conversation at a very casual Bar & Grill called,Roosters. It was great! Although we did not take that place over as our group was much smaller then previously. Then, more "good byes"...er...I mean "see you laters".
Back at the Lees' house, I finally get to pick Phyllis' brain. I think the guys went to bed, meanwhile, us girls sat up pretty late talking. I really enjoyed talking to her. This was the 1st time we ever met. I can't wait to meet again!
Monday morning:
We spent the night at the Lees' house. Geo cooked breakfast, (no, not pudding!) French Toast & Bacon. Soon we will be heading to the airport, that is a bittersweet thought. The Lees' home is so warm, inviting and comfortable. My spirit feels renewed.
The weekend left me feeling energetic and happy.
It is almost impossible to convey with words, the feelings that the gathering left me with.
If you were there, you know exactly what I mean. If you were not there, you should have been! I will be riding the wave of these positive feelings for months, I must admit tho, I have a touch of P.O.B.S. (Post Ohio Blues Syndrome) Again, those that attended, know exactly what I mean. See ya later.....KC....bark~!

Green light!

2011-05-18T18:54:00.000-07:00

I saw Dr. Zu, my oncologist today,
and he gave me the green light for another 6 months.
Go me - remission rocks!
I brought Heyzeus with me to the Cancer Center,
and I am soooo glad I did. I was hoping to meet the 2 ladies with the Black Lab sisters, but they weren't there today ;-(
My visit with Dr. Zu only took about 10 minutes.
Afterwards I asked the head nurse if we could go hang out in the treatment area and visit. So we did. I was unsure what to do really,since I am not really able to hear the patients, and my eyesight is so bad...
you know, not everyone wants to be approached by a dog......
So we just walked s-l-o-w-l-y thru the treatment room (which is just a 50 foot room of recliner chairs with patients sitting, getting chemo) and one of the patients gestured out to me, well to Heyz really, lol.
And there it began, we fluttered from one person to another, holding out their hands, towards Heyzeus,
wanting to pet him. As we were making our way thru the room, I was tapped on the shoulder and told
"they want you over there". That happened 3 times;
3 different patients wanted to touch/visit with Heyzeus.
I was floored. None of the patients were speaking much to me, but they seemed to be pouring out their hearts to Heyzeus.
I have been there. I know exactly what it feels like to be sitting there, all hooked up to tubes and just ALONE. It takes your thoughts to some very dark places. Its scary. That is the position I was in when I met the Lab Sisters, all of those dark thoughts evaporate from your mind while your nuzzling a dog.
At least for me that is how it was....this was the place where I had my chemo, and the nurses took very good care of me, today I felt like I was giving something back, and Heyzeus helped me give it.
bark~!

KUSI Sement on Facial Paralysis

2011-01-21T14:46:00.000-08:00

If you have not seen this already,
check it out....
http://www.kusi.com/story/13688828/making-you-happy-one-smile-at-a-time

Thanksgiving 2010

2010-11-27T12:49:00.000-08:00

Thanksgiving was good!
This was the first time we "hosted" the family meal
at our house, our new home. ;-)
It was great!
Geo's sister Marsha and her hubby Doug were here,
along with Geo's Dad.
I cooked an "Upside Down Turkey".
Dad had me all worried and anxious about that
but I must say it came out excellent.
Very moist and tender.
I will defiantly use that recipe again.
Next up: Christmas.
Unfortunately, we are not doing it here tho,
Marsha will host it at her house,
in Lakewood, in Los Angelas.
We agreed to switch off every year,
next year she gets Tday, and we get Xmas.
Sounds fair to me!

BONEHOUSE

2010-08-13T12:38:00.000-07:00

We have moved to San Marco,
a city in the county of San dIEGO.
i am in paradise here! The past week has been a whirlwind; productive, exhausting and chaotic!
i have never lived in a house like this, i keep getting lost in it lol. When the guys were moving boxes in, i had marked them all,bedroom, bathroom, etc; they started teasing me..."which bedroom,there are 4! which bathroom, there are 2??" lololol!
I think i said b4, its a 3 bedroom, Geo corrected me on that, it is a 4. There is so much closet space, with shelves, A huge walk in closet in our bedroom, We are keeping all 4 cats in what i call "the lions den", until they get acclimated to being here, they are still a tad freaked out. That room is huge, it is actually 2 bedrooms, it was made into 1 room, Geo will turn it back into 2.
So that is also Dads room, he loves the cats, and its mutual.
i have a laundry room! Wait until u see my pantry, its huge! i am loving the kitchen, i never had a garbage disposal, or a dishwasher, now i have both. ;-)
it has a smooth top oven, its electric tho, cooking on that is a tad different, but so far i like it.
There is a 'kitchen nook', like a sitting area in the kitchen, which i really like.
The living room and dining room is hardwood floors, not laminate, real wood, its beautiful.
One entire wall of the dining room is a double sized sliding glass door.
Geo has a dining room table for that room, we just have not set it up yet. There is bunches of stuff to do yet.
It has a fireplace, i so missed having a fireplace, i just really like them.
It has a double door entry, with a foyer. We dont even have enuf furnishings for this house, but thats ok, ttat will come. ;-)
Did i mention the pool? Heyzeus and i have gone in every morning since we been here. He loves it AND the additional benifit to that is it totally tuckers him out, which is great, he has alot of energy, with him tired i can get 'stuff' done.
There is a park 1 and 1/2 blocks away, another one 3 blocks away in the other direction. ;-) Acroossbthe street is a park! These are not public parks, they are private property, for the residents of this community. They are all intertwined together, wth walkways, well lit, doggy waste stations, etc....
i have not gone exploring the nieghborhood much yet,
and today is the 1st day i went online, i am busy 'nesting'
oh! i almost forgot! Geo surprised me with a brand new refridgerater, it is a double door Amanda,
it has n ice maker on the door, u can choose cubes or crushed ice or cold water. U don't even have to add the water, it does it all by itself, lol, this is probably old hat to some of u, but i have never had a fridge like this, lol.
So far i have rearranged the food and the shelves in it several times.
I wake up every morning here grinning, we both do.
i am just in awe that this is our home, like pinch me u know?? ;-) i feel very blessed. This was certainly worth the wait. im so very excited still.
OH! Geos commute to work? its about 10 minutes now, thats a major plus, it changes his entire day, bf his commute was about an hour.
i could go on and on! but that enuf for now ;-)
happily barking...KC

Tough call...

2010-07-23T16:27:00.000-07:00

So, I have been to NIH, in Baltimore, MD,
twice now. Both times I was so impressed by the
entire staff there.
The 1st time I was there, the doctor at the eye clinic,
determined that I have a large cataract in my left eye.
So, I went to my eye doctor here, in San Diego, to have
cataract treated/removed. Both doctors agree that removing
this cataract will greatly improve my vision.
HOWEVER, there is a very small risk (5%) that the procedure
may not be successful, and could cause immediate
(irreversible) blindness.
No big deal right? After all, it is only a 5% risk,
with a 95% success rate.
Those are good numbers, that is a tiny, minimal risk, right?
Not to me. I am completely blind in my right eye.
So that tiny risk seems enormous to me.
I don't think I want to chance it. I would love to improve
my vision, but....not at the risk of losing the vision I have left.
The eye doctor also said that,
"yes, leaving it be is an option, BUT you are risking eventual
blindness by doing so."
WTF? "eventual" or "immediate"
What would you do?

gotta love beer!

2010-05-15T16:10:00.000-07:00

WHO KNEW? ;-)
CHEERS EVERYBODY!
Beer Inhibits Tumor Growth
CORVALLIS, Ore., Nov. 7 (UPI) -- Research at Oregon State University shows that beer contains a micronutrient that inhibits cancer-causing enzymes.

The compound, xanthohumol, was first isolated by Oregon State 10 years ago and an increasing number of laboratories across the world have begun studying the compound, said Fred Stevens, an assistant professor of medicinal chemistry at Oregon State's College of Pharmacy.

The substance comes from the hops plant used to give beer its aroma and flavor, ABC News reported.

Most beers made today are low on hops, however, and so don't contain much xanthohumol. But beers such as porter, stout and ales have much higher levels of the compound.

Mice studies show that the compound is metabolized quickly by the body, so it's hard to get a large amount in the body at one time, Stevens said.

"It clearly has some interesting chemo-preventive properties, and the only way people are getting any of it right now is through beer consumption," he said.

http://www.kentd.com/index.php?option=com_content&view=article&id=99:beers-good-for-you&catid=1:latest

Just Stuff....

2010-04-19T13:11:00.000-07:00

I saw Dr. Zu (my oncologist) the other day,
not only was the cancer non-evident in my bloodwork,
he feels no need for me to have any future PET Scans.
I will go for bloodwork every 6 months, but otherwise I am
done with the whole 'cancer chapter' of my life.

I got, and am wearing my BTE ABI.
So far so good! The sounds are better with this thing.
The other day I was zipping up the zipper on a back pack,
and I heard the zipper! I haven't heard a zipper in years!
I forgot they even made a sound.
And it sounded just exactly like...a zipper! LOL
Needless to say, I sat there zipping and unzipping for a few
minutes. ;-)

Geos dad is staying with us.
His name is also George,
so I will just refer to him as Dad.
And no, if you are wondering, my Geo is not a Jr.,
he is the 3rd George in the Sotier line ;-)

EASTER WEEKEND

2010-04-03T16:19:00.001-07:00

I finally got my BTE ABI in the mail from Cochlear,
geeez, they are slooow!
Anyway, Monday I will sent it off to Steve Otto for him to program
and once I get it back, I will be wireless!

We are going up to L.A. tmw, for Easter dinner at Marshas house. (Geos sister) Then when we come home we will be bringing Geos dad home with us,
and he will stay here indefinitely.

HAPPY EASTER EVERYBODY!

Guess what I got in the mail today.....

2010-02-10T17:48:00.000-08:00

My insurance sent me the approval for my BTE ABI.
It has only been 10 and 1/2 months.
(do the math, that is 311 days)
I'm stoked!
And yes, we are talking Medicaid/SSI.
After a denial, they are covering it.
Amazing.
If you too, are covered by the state,
and are hoping for the upgrade;
don't give up, jump thru whatever hoops they throw at you,
deal with the red tape,
and keep the prize in sight!
bark~!

NIH - Wednesday

2010-01-06T06:30:00.001-08:00

I am typing this from the computer room at NIH, in Bethesda, Maryland.
NIH is huge, it is like a little city.
The internet connection and computer use is free to all guests here at NIH.
Gotta love that.
The weather? Well outside it is cold (26 degrees last night) but I have spent the entire trip
lugging around my down jacket. I packed sweaters, scarfs, hats, gloves, etc.,
for this venture into the tunda, and I have used none of that!
Every where we have been is heated; the hotel, cabs/shuttles, and of coarse
NIH is heated. So every where I go, I keep wishing/asking people to
'please turn down the heat" I hate heated air! So much for freezing..:-)
Yesterday I had 2 MRI's, uneventful. Today I go to the eye clinic
and then later I see an ENT, no idea for what. I got to admit,
I love all the medical attention, from people that are actually familar
with NF2. These people are very knowledgeable about NF2,
so not having to explain it every 5 minutes, is very nice.
Last night we ate at Hard Times Cafe (thanks Olivia;-))
We enjoyed it!

IHSS Decision

2009-12-12T14:30:00.000-08:00

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

Frustrated....

2009-12-05T16:06:00.000-08:00

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!

Hearing Results....

2009-11-25T17:55:00.000-08:00

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 "whoa.....is 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.
bark~!
~KC

I.H.S.S.

2009-11-12T15:24:00.000-08:00

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 ;-)

I told ya so...

2009-10-06T12:58:00.000-07:00

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:
http://www.clinicaltrials.gov/ct2/show/NCT00598351?term=natural+history+of+NF2&rank=1
Today I mailed my most recent MRI's, family history, a summary of my nf2 experience, etc.

Good qoute....

2009-09-27T11:41:00.000-07:00

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

Never again...

2009-08-06T11:41:00.000-07:00

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.

...dem bones

2009-07-22T12:47:00.000-07:00

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 ;-(

BP MRI REPORT

2009-07-16T14:55:00.000-07:00

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.

2009-07-14T16:05:00.001-07:00

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 ;-)

whatever...

2009-06-30T12:57:00.000-07:00

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".
So....now 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...

Marathon time!

2009-05-30T11:34:00.000-07:00

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:
http://www.active.com/donate/nfsandiego2009/denlow2
Tonight there will be a pasta dinner, for all the CTF runners and supporters.
Meanwhile, GO DANNY!

who needs it?

2009-04-24T15:19:00.000-07:00

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 ;-)

Life is Good...

2009-04-06T08:44:00.000-07:00

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?!)

The Good - The Bad - and The Ugly!

2009-03-12T17:55:00.000-07:00

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 Meningioma 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!)

Mind Over Matter...?

2009-02-26T13:12:00.000-08:00

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.

I NEVER HAD ANY DOUBT....

2009-02-11T10:43:00.000-08:00

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!

MRI/PET Scan results...

2009-01-23T10:01:00.000-08:00

My MRI results.....
(drumroll)
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.

Finally....

2009-01-06T10:03:00.000-08:00

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.....

Marathon & stuff...

2008-12-10T12:03:00.000-08:00

The trip to Vegas to support the NF Endurance Team was great! CTF had a pasta dinner the night before, and they showed a video, which thanks to Olivia, was captioned! Since I am also visually impaired, I sat with Olivia, and we watched it on a laptop. That worked out marvelous.
All of the people I met at the CTF dinner were very friendly and went out of their way to make me feel included.
Olivia ran the half marathon (13 miles) Danny ran the whole marathon (26 miles) both succeeded and completed their runs!
The run started at 6 am, before the sun was up, it was cold! We walked all over the place, I was tired of walking and freezing! As I shivered, I kept thinking of the runners, and all the different causes they were representing, and my complaints vanished.
My pictures didn't come out as good as I was hoping.I will post some of the better ones at another time.

Today i saw Dr. Zu (my oncologist) we talked about the results of my last PET Scan. He said that I do have something new on my right thigh. It was not there before but he is not sure what it is, so he is ordering a MRI to look at it better. (ugh)
My next round of chemo is in February.

More surgery....

2008-11-08T11:23:00.000-08:00

Next week is going to be a busy week!
This appt for the lip procedure is Thursday.
It is surgery, but I'm pretty sure it is outpatient surgery.
I will find out the details on Monday, when I go for pre-op,
and to see Dr. Mehta.
Then I have ANOTHER pre-op on Wednesday,
with the anesthesiologist. Don't ask me why they don't
do both on the same day....who knows, who cares really?
I'm just glad it will be getting done!
Wednesday after pre-op I have to go to the Cancer Center,
to get my port flushed, and take a blood test.
No, I still don't know the results of my last PET Scan.
My fault tho, I just haven't asked Dr. Zu yet. Two reasons:
1. The fine art of procrastination, in which I excel at.
2. No news is good news.
If the results were terrible, and something needed attention now,
I know I would have heard from Dr. Zu.
So its all good.
I have had some pretty bad nights lately. Drenching sweats,
but not to the extreme as the ones I had when first dx'ed.
My wrist is all scabbed on both sides, from me itching in my sleep.
For no particular reason, I just scratch myself raw, until it bleeds.
According to my research, these "phantom itches" are a known problem in people with Lymphoma. Great, huh? Grooaaan.

Rocktober

2008-09-30T06:52:00.000-07:00

I am behind on updating this....
Last week was my 'final' chemo treatment.
By 'final' I mean, no more chemo for 6 months.
Every 6 months, I will have 4 treatments.
One per week, for 1 month, for the next 2 years.
Not a big deal.
Especially with the 'port', it is a godsend, and has changed my entire chemo experiece.
Check out the video of the port being accessed last week.
http://www.youtube.com/watch?v=7AW4wBWhHlU
Next week I will go have another PET Scan.
The results of that scan will determine if my chemo scheduale
has to change. I don't forsee that it will tho,
I feel fine.

I got the approval for the lip procedure,
I just hav'nt made the appointment yet.
The exact name of the procedure is
Accellular Dermal Replacement.

Lip plumping

2008-08-30T11:06:00.000-07:00

Ok, so I saw Dr. Mehta yesterday for the lip plumping. His words....

"I know you wanted the lips to be fuller so that you can get closure. i know exactly what you are saying. The lips were fuller before from the swelling induced by the operation.

Dont worry - we can get them fuller again. That will be our goal. You are healing beautifully. It's moving a lot more than last time I saw you. I am very encouraged to see that movement at your lips. You look fantastic compared to before! I think if we now focus on lip augmentation, that would be great.

There are 2 ways to do it:

1) Restylane injection here in the office - can be a little painful even though we give you numbing medicine. not too bad.

Downsides of it: lasts for a few months - not long lasting. Also, very expensive although we have approval to do it today.

When it wears off, you can have it again if you liked it. Or go to second option:

2) minor surgery to augment lips using Alloderm - a material that we have in the O.R. It's artificial skin - works very well - lot of people use it for cosmetic purposes. Gives you nicer, fuller lips and will help you close better.

It's done under local anesthesia with maybe a little sedation. No fat is used, it's ready made material in a package. The procedure is easy to go through, takes less than an hour. Lips are a little swollen/bruised for a week. We just did this technique 2 days ago for a lady with facial paralysis. She likes it. She also had restylane before (twice) but it wasn't lasting long enough, nor making her lips full enough.

So it's up to you which option you want to do first."

(here i opted to try the restylane first. From start to finish it took about 20 minutes. Then we went back to discussion)

"I was hoping that a little restylane would do it, but that was wishful thinking. It looks better. The upper lip is not as thin. but your closure problem will just need a lot of volume which the other technique does well.

We used 1 full cc of restylane. Now, your lips are so thin that its going to require a lot of volume to get it to where we want. Even if were to use one more cc , it is not going to be enough. You may notice a little benefit - certainly they look better already but to get that closure you need, we will need a larger volume technique like the other option we talked about.

That's what I think will work best for you. Otherwise we will be injecting a ton of restylane into your lips for not a very long lasting effect. Your insurance also will not allow us to inject that high volume. You can see that the lips get fuller with restylane but you just need a lot more to get closure. From facial paralysis, the muscle in the lip gets so weak and thin. You already had thin lips and the facial paralysis has made it worse. Make sense?"

(Here I decided to go for the other procedure He will submit the request to the insurance today. Once it's approved, we will go ahead and just do it.)

"We will put in 2-3 strips of alloderm material per lip so it will be a lot more stuff in the lip than the restylane."
(I asked him, how will you gauge how much to put in?)
"It is sort of an art where you have to estimate. We can always do it again if we need to. the good thing about it is that is much more long lasting - likely permanent."

2008-08-28T17:22:00.000-07:00

So the insurance approved the Restylane injections
for my lips. That was fast! (for a change)
I go tomorrow (8/29) to have that done.
Dr. Mehta will do it there in his office.
Wonder what that will feel like?
Anybody know?
Anyway, afterwords, I should look exactly like Angelina Jolie.
Just kidding. ;-)
I start the chemo (Rituxan) next Wednesday (9/03)
This round of chemo will be one day a week, for four weeks.
Ding! Ding! Ding!

Fine tuning stuff....

2008-08-25T16:25:00.000-07:00

No leak! It's all healed, yay!
For the 1st month or so, after the face operation,
I could easily make B, P, M, sounds. Plus I could close my mouth,
bring my bottom lip, to my upper lip, easily.
I was overjoyed with that!
But now I can't do that. ;-( The swelling has totally dissipated.
Now I can't make certain sounds, or close my bottom lip.
Bummer.
So, the plan is Restalyne (sp) injections, to plump up my lips, to restore a little of the swelling to that area. These injections would be similar to Botox. We are waiting on the almighty (coff coff) insurance to approve the Restalyne.
I just heard from my oncologist, Dr. Zu, that I am due for more Rituxan (chemo) this month. ugh! I thought I was done with that ;-( I haven't had any chemo since march! Oh well, bring it on!
In other news, the bike is done! Geo took saturday off and we hit highway 101 and put about 200 miles on it.

WATER WORKS...

2008-08-01T17:15:00.000-07:00

As far as the leak goes, I think its healed. Dr. Mehta has had me taking a medication to decrease my saliva output. Today is my last day taking that med. So, has the gland it healed? Or has the leak stopped due to the med? I guess I will find out when 'I turn the water back on.' Stay tuned....

The leak....

2008-06-30T14:37:00.000-07:00

The left side of my cheek, at the incision site has been leaking.
I saw Dr. Mehta 2 weeks ago, and he told me it was normal and part of healing,
and that it would heal..
Well it hasn't stopped. It leaks more now than it did 2 weeks ago.
It really leaks when I eat. I tape a 2"x 2" gauze bandage over the area before I eat,
within 30 minutes, that bandage is saturated. Obviously, something is wrong,
Dr. Mehta's words:

"I now strongly suspect that the drainage is a saliva leak. If it was related to routine wound drainage, it should have resolved by now. There is a salivary gland duct that runs close to that area and it appears to be leaking unfortunately. I am glad to hear that you have no fevers. However, I would like to see you to start some treatment to decrease the drainage. There is a medication I would like to prescribe to decrease salivary flow and also to put on a pressure dressing on that site. These conservative measures often allow the leak to heal. The next steps beyond that would be injection of Botox into the left parotid gland and beyond that would be a minor surgical exploration of the wound - hopefully we don't have to get to either of those (esp as they require insurance approval). Can you come in to see me this week?"

So. tmw I am off to see him. I knew something was wrong ;-(
Oh well, no worries,
I have all the faith in the world that he will fix it.

2008-06-07T14:30:00.000-07:00

What? Where? Who?

What:
Bilateral Temporalis Muscle Transplant,
aka T-Flap surgery. Both sides.
Dr. Mehta's words :
“ The incision will start in the hair, right above the temple, and come down to the earlobe, on both sides.
There will also be an incision in the nasolabial fold (lip cheek crease) on both sides.
The chewing muscle at the temple on each side,is stretched and attatched to the muscles at the corner of the mouth. We always OVERCORRECT quite a bit – that means that the corner of the mouth will look very pulled up on each side. This is normal and will relax over time.
The t-flap will act as a sling, holding and supporting the muscles of the face upward. In 2 or 3 weeks, you will start pyhsical therapy, to learn to use the tranferred muscle, and create a moving smile by clenching your teeth.”
Where:
The Thornton Hospital
La Jolla,
CA
Who:
Dr. Ritvik P. Mehta, M.D.
Otolaryngology
Head & Neck Surgery,
University of California, San Diego (U.C.S.D.)
9350 Campus Point Dr.
La Jolla, CA (619) 543-5910

After the Con....

2008-05-27T12:44:00.000-07:00

Its always so bittersweet after the con! It goes by too fast, but its so great to see everybody! Lots of familiar faces and a few new ones too.
You can see some of my photos here: http://www2.snapfish.com/thumbnailshare/AlbumID=229127698/a=132105675/t_=132105675
Tmw I go into the hospital for the T-Flap surgery, for my face. It sould only be a 1 night stay, maybe 2. Wish me luck!

EYE APPT.

2008-05-01T11:12:00.000-07:00

Today was my appt. with Dr. Gualtierri. It went great!
He is going to implant the gold wieght next friday.
YAY! Things are looking up!

i'm stoked!

2008-04-28T09:50:00.000-07:00

This just in, from my caseworker:
"The surgery with Dr. Mehta was approved. (FACE SURGERY) They emailed me the auth number yesterday. Go ahead and forget you ever had the visit with Dr. Westeren (IDIOT EYE DR) There is another doctor we would like to send you to...."

This is the most incredible news!
My face surgery was approved!!!!!!!!!!!
I'm so thrilled!

2008-04-24T09:35:00.000-07:00

My eye doctor appt. yesterday was with Alan Westeren at 9am. His suite was on the 2nd floor in a big office building. So I get there just before 9am, and his office is completely locked up. I’m hanging out in the hallway, waiting, and he finally shows up at 9:30.
There was no secretary, and no nurse; just him,
doing all three jobs.
He finally brings me back to the examination room,
and proceeds to give me a vision test. He would not let me set up my laptop, to communicate, so I produced a pad of paper and a pen. He would not write to me. He kept his cell phone in his pocket, and every time it rang, which was pretty dam often, he would answer it and the rush out of the room! (to go play secretary I think)
He was using a digital camera to take pictures of my eye. I did not understand this at all, he was examining my vision, with the eye machine thing, a slit lamp, and some other tools. My vision was not the reason for the appt! He
even had me read the eye chart, or attempt to, with my right eye (my blind eye) hello! I had just told him that eye is completely blind!
He gave me 2 forms, and told me I need to send them to my previous eye doctors to get my records, before he can make any recommondation. Wtf? Why do I need to do that? I asked him if I could just sign them and his offeice could send them......his reply was "no, I don’t have the addresses." He told me that this was "standard procedure". How can this be standard procedure,
when I have NEVER been asked to do that before?
He kept leaning into my ear, yelling to communicate with me. I kept telling him, I need to SEE your lips and please don’t yell. It does not help at all. Meanwhile, he is still running out of the room every time his phone rang, leaving me in the examination room for endless amounts of time!
I felt like crying. He came back, I handed him the paper and pen and told him
"Please write to me, I have never had a problem communicating with a doctor, but this is not working. The Americans with Disabilities Act, states that you must communicate with me, and you are not."
It was only AFTER I said that, that he started writing to me. He would jot some stuff down,
then hand me the pad or paper and rush out of the room, giving me no chance to read it and ask questions!
Then he dialated my eyes with those drops. WHY? What does that have to do with my eyelid closeing?? Now I’m back in the waiting room, while the dialation happens, and he is running around, playing secretary, and nurse, and doctor to other patients that were there.
Now its like 1:00 pm, he brings me back to the examination room, and examines my eyes some more. And again, he tries to get me to read the eye chart, with my blind eye!
He never told me what he recommended. He never told me anything! I asked him numerous times about the gold weight, he finally wrote down, ‘after you send away for your records, I will decide IF you need the gold weight, then IF I recommnd it, it will take about 6 weeks to get approval.’ (He circled the word IF several times) So I asked, "what do you mean
by ‘IF’? It’s a no brainer, my eyelid does not close all the way....." His reply to that was just pointing to what he had just wrote.
I told him "you need a secretary, a nurse, and most of all you need to work on your bedside manner." He chuckeled at that but I was dead serious!
This was the most unbelievably unprofessional doctors visit I have ever had.
My impression of him: incompetant, unprofessional, and unorganized.
I finally got out of there at 2:30. Oh, and the absolute clincher? We are standing at the reception area,
I handed him John’s card (my transpo) and I said "Will you please phone my ride home?"
He gestured to the phone on the desk and said "Help yourself."

Everything is a fight...

2008-04-23T07:06:00.000-07:00

well..........last time I updated this blog, I was really excited.
I had just seen Dr. Mehta, regarding reanimation of my face -
t-flap surgery. Guess what? My insurance company (Molina) denied it.
Yes I am appealing it. 'They' are sending the case to a 3rd party,
to determine that the surgery is "medically nessasary".
How exactly does that work? I mean I will not die without the surgery.
My life won't be threatened by not having the surgery, however it is a chance to improve my quality of life. Why does everything have to be a fight?? ***
Today I go see ANOTHER eye doc regarding the gold weight surgery.
I was all set to have this surgery and on the day of it, my insurance company balked. So I appealled it, and todays appt is where that appeal has led me. This is totally crazy. The eyelid surgery IS urgent.
Last friday I had a Pet scan to see the status of my lymphoma cancer.
What cancer?? ;-) I feel fine. I feel great actually. I have been riding my bike (trike) almost every day. I take Heyzeus with me to the park, thats 3 miles each way....wooooo. (not a dog park - but better than no park at all)

***When I had my left side AN/VS removed (2004) I literally begged for a nerve graft because I feared coming out of surgery with bilateral facial paralysis. (I already had unilateral - right side) I was told "oh, you won't need it." opps.....I did end up needing it! I really wish....I just kick myself for not pushing the issue, and insisting on it. Now I'm in this fight with Molina, to get the t-flap surgery approved. My point? Be relentless in going after what you want.

March in a nutshell....

2008-03-24T10:25:00.000-07:00

Last time I updated my blog and posted it on the nf2crew, I asked “are you guys sick of me doing this?” I received many many replies, both on and off the list, all positive. Thank you all for that.
It is overwhelming, yet great, to feel all the support.
March 13th, was my last bout of chemo. For this round anyway. Next month (apr) I will have yet another PET scan and Dr. Zu says “we will take it from there”
The day of the eyelid surgery, (3/19) they cancelled it. Grooooan! My insurance company says they are looking for a different doctor to perform it. So according to them, the surgery was not denied, it was ‘only’ cancelled and is still pending. Wtf is the difference?! From my understanding, they are not denying the service, just denying that doctor perform the service. Whatever, I am appealing the decision. Meanwhile, I have needed this eyelid thing for months now.
Last but not least, I saw a doctor who specializes in facial reanimation. I saw him on 3/21/08.
The doctor is Dr. Ritvik P. Mehta, M.D. Otolaryngology, Head & Neck surgery.
My appt with Dr. Mehta went fantastic! What a nice man he was, he was very thorough and just went out of his way to communicate with me, and answer ALL of my q's.
We discussed my different options (I have 3) and I decided I want what is called a Temporalis Muscle Transfer (T-FLAP). So he is going to start the process (?) for me to get that done. He said to call him in 1 week to set a date for surgery.

2 down, 2 to go

2008-02-29T09:55:00.000-08:00

Well, what a way to start the day yesterday!
I was headed out front to wait for my ride (to chemo)
There are 2 houses on this lot, we are in the rear house.
So to get to the street you have to exit our gate, then walk up the nieghbors driveway. I got to the end of the driveway, to the sidewalk and bam! Down I went. I hate that driveway! It is unpaved and unlevel and just tretcherous as hell. Not to mention all the crap and mud from the recent rains. ugh!
Plus I can't 'wall walk' using the fence as support because they have all these potted plants along the fence.
Shit happens, I'm fine but I ripped the knee of my favorite jeans!
The day before this, I was out mowing our backyard....so whats my point?
I don't know....I guess you just never know what the day will bring!
The chemo itself was uneventful.
As any NF2'er can tell you, 'uneventful' is a good thing. ;-)
March is going to be a busy month.
My next chemo treatment is next thursday, 3/6/08.
Then the following day I will have a brain MRI,
discuss the results with Dr Slattery,
and then see Steve Otto for my ABI tune up.
This will all be up at HEI in Los Angeles.
We will have to hit the road early, and it will be a long, full day.
My last appt that day (with Otto) is at 3:30, so we should be back on the road heading home just in time for L.A. rush hour. Groaaan.
Then 3/13/08 more chemo and a consult with Dr. Zu.
Then on 3/19/08 I'm going for outpatient eye surgery.
They are going to put a gold weight in my left eyelid, as it doesn't close all the way.
I already have one in my right eyelid (2004) I have been happy with it, and its just time to do the other eye.
Busy month!

3 to go....

2008-02-23T12:00:00.000-08:00

I slept like a rock after chemo last thursday.
And I slept most of the next day as well.
The chemo left me tired and drained.
But, no night sweats, no heartburn and best of all...
No evil steriods this time! yay!
My next chemo is 2/28/08,
next thursday.
Just pondering....Cancer vs NF2,
which one is worse? which better? They both suck!
Both can be devastating diseases.
However, the 'face' of Cancer is much more well known.
With Cancer I have found state of the art treatment centers, knowledgable nurses and doctors, caring staff, planned out management of my cancer,
and many different support systems.
With NF2, not so much.

4 to go....

2008-02-16T14:22:00.000-08:00

I have 4 chemo treatments coming up.
The 1st one is thursday, 02/21/08, and then the next 3 thursdays after that.
In the past week I've had night sweats ALOT, boooo, not good.
(its the #1 symtom of lymphoma)
Therefore, I'm kinda looking forward to the chemo treatments,
as it seems they are right on time to keep the lymphoma at bay.
I am not looking forward to the steroids that I assume* I will have to take after chemo. I keep forgetting to ask Dr. Zu about that, I will email him now!
* assume nothing, question everything!

T.G.I.F.

2008-01-11T11:43:00.000-08:00

The cough is lingering, but my lungs are clear, finally!
I saw Dr. Zu yesterday and he assured me it is just a cold. I was getting a little worried since it is hanging on so long. He said the chemo probably wacked my immune system.
My pet scan was negative for anything new, and my blood count is good. In febuary I will have 4 days of chemo; 1 day per week, for 4 weeks.
It is just to maintain my health, not to treat anything new. Now that I have this port, and know what to expect, I'm not even really worried about it.

Marathon

2008-01-05T17:47:00.000-08:00

My friend Danny, is running in Carlsbad with the CTF NF Marathon team.
The marathon team raises money for NF research.
The race is January 20th, which is also his birthday! ;-)
Check out the race page at:
http://www.active.com/donate/nfraceforresearch08/denlow
Please support him if you can, and spread the word!

2008

2008-01-03T11:43:00.000-08:00

I had a pet/cat scan on Dec. 28th. I see Dr. Zu on Jan. 10th,
to discuss the results. This will show where the cancer stands.
In the past few weeks, I have only experienced 2 or 3 night sweats. (the #1 symptom of Lymphoma)
I have had a pretty severe cold, since Dec. 27th. At least I hope
its just a cold. I have a deep, dry, non-productive cough. My lungs are totally full of mucus, but I can't cough it up. Sometimes I can't even catch my breath. My breathing is very labored.
We almost went to the ER this weekend, but I refuse.
I could not see spending the entire day there, explaining NF2.
No thanks....it was New Years day!
Yeah, I know, every non smoker in the world can say
"I told you so", but can you say addiction? Thats what it boils down to. I haven't had a ciggerette since Christmas day.
I quit. Yes I have quit before. I think I was about 15 years old when I started. I was a very heavy smoker for like 20 years.
The last 5 years have been on and off, on and off.

Oct. 25...my bday

2007-10-25T15:12:00.000-07:00

Well, I saw my oncologist, Dr. Zu today.
He gave me until January....
thats right, January 10th, until I have to see him again.
At that time, he will review the results of my scan
(a PET Scan, I will have mid-december) to see how I am doing.
At this point (healthwise) I am doing very well.

Round #6 update

2007-10-09T15:25:00.000-07:00

...finally huh? I've been just a tad distracted. Aren't we all?
Anyway, Dr. Zu said that my PET Scan results were good. He didn't say alot about the results, since they were not bad or showed no new growths, that explains that!
That was last thursday, the 4th, and it was my LAST chemo!!! YEAH BUDDY! I do have to go back to the Cancer Center on the 25th (my bday!) for a blood test and a consult. The appointment card also has me scheduled for chemo, but I believe that is a mistake. What Dr. Zu says goes; and Dr. Zu says I'm done.
Now for the yuck news: after Dr. Zu told me it was my final treatment, I asked him if my Cancer was in remission now. He explained to me,
"Thats a hard question....this kind of Cancer does not really go into remission."
It is my understanding, from him and from my own research, that it is more a case of this Cancer being active or non-active right now. Right now, it is non active, but I will have it the rest of my life.
In 6 months I will repeat another bout of chemo; 1 day a week, for 4 weeks. Then I will repeat the PET Scan, and see where things stand.
So......I can say that was my final treatment, for now. Let the future bring what it will.....

tommorrow......

2007-10-03T13:47:00.000-07:00

Tommorrow will be chemo # 6 and hopefully the last one!
I will also get the results of the PET Scan,
I am just positive those results will be great!
How can they not be? I feel good, have had very little side effects from the chemo, am not symtomatic from the Lymphoma and, um, I just deserve a break! lol
Transpo is all set up, they are to take me to the Center, and then bring me home when I'm done. Hopefully transpo goes without a hitch this time.
Suzanne is going to meet me at the Center and see Dr. Zu with me.
I have a feeling that tmw will go very well.....life is good!

Rainy day...

2007-09-22T15:13:00.000-07:00

Yesterday the PET Scan went fine. Transpo turned out to be a FIASCO!
I had arranged transpo with Karen King, (caseworker) but at quarter to 11, my ride was still not here. Scan was set for 11 am. I was in a panic. Then Corky (a friend) showed up, so I had her drive me, and drop me off. I was sure I could get the company (called Secure) to pick me up.
The scan lasted about 1/2 hour, it was a breeze. Then I had the receptionist call Secure to come get me. I must have looked hungry, because she gave me a food voucher, and pointed me off to the cafeteria. I was starving at that point, and they have a really good cafe there. who knew?! lol
Now about an hour has gone by, still no ride. So I had the receptionist call Secure again, and she was told "we didn't drop her off, so we aren't coming to pick her up" what!!? She explained the situation and they still stuck by the "no drop off--no pick up" ugh Now what....
I had her call Corky, and she came and got me. It was like 3 pm once I finally got home. whew...bless that lady's heart for the food voucher!
No idea what happened with my transpo, someone just messed up. and I didnt contact Karen King, it would be pointless...she is on a 6 week sabatical, every other time she has arranged my transpo, it has gone perfectly. Sometimes shit just happens, it all worked out in the end.

5th round of chemo, etc.

2007-09-15T10:40:00.000-07:00

I had the port implanted wednesday, it was a breeze, it was sore as heck after wards, now its ok, still a little yender but no biggie.

Thursday I went for a chemo treatment. Wow, what a difference that port makes! I was hooked up to the I.V. in about 2 minutes. First they drew blood out of it for the blood test, then just capped it off and switched over to the chemo drugs, and turned on the drip. All that and just one pin prick! Awesome! The treatment took about 5 hours, I read, napped, daydreamed, etc. Didn't see Dr. Zu that day.
I have had ZERO side effects so far from this round. Well, tired muscles, but thats been a given throughout this experience.

Friday I went for the PET Scan, after going all the way there and getting all set up, a blood test determined that my blood suger was too high for the scan.

They said it was too high because of the post chemo steroids I am on, plus the one cup of coffee I had. They had told me "no solids, only fluids and medicine", last I checked coffee ain't a solid, and I have no idea what my blood suger level has to to with the scan. But anyway, the PET Scan is rescheduled for next friday the 21st.

My next chemo treatment is scheduled for 10/4, that will be the 6th one, and hopefully the last one for awhile. Hopefully Dr. Zu will have the results from next fridays scan, and discuss them with me. I predict the results will be good!

busy week...

2007-09-10T11:53:00.000-07:00

It's going to be a busy week.
This morning I went to get blood drawn, no biggie it just took a few minutes. Suzanne took me.
Wednesday I go get the Port implanted. That should take about 1 1/2 hours. Suzanne is taking me.
I am due for a chemo treatment Thursday, but I am waiting for Dr. Zu to verify that.
Friday I go for the PET Scan. I guess it is simalar to a CAT scan, and should take about 1 1/2 hours. Geo is taking me.
And just think, last week I felt forgotten. ;-)

No word...

2007-09-06T14:11:00.000-07:00

I have heard no word on the port, or anything else.
I feel like they forgot about me or something....
Chemo is supposed to be every 3 weeks,
My last treatment was 2 weeks ago today.
I'm kinda stressing out on that.

chemo round #4

2007-08-24T10:48:00.000-07:00

First my appt with Dr. Zu, which went like this:
(I talked to him, he used my laptop the type to me. Kudos to Dr. Zu)

Me: Will this be my last treatment?

Dr. Zu: "NO, this is 4th, you need a PET scan,
it will show if all tumor is gone.
You need two more treatments, For a total of 6.
I think you are doing pretty well. I will schedule it for you, in about 1-2 weeks.
As for the disappearing lump, it's good that you could not feel it anymore.
The PET scan will show the status of the cancer."

Me: I want to get a port. What will this entail?

Dr. Zu: "It's an iv implanted in your chest. done by the radiologist. It's an outpatient procedure. Local anesthesia.it takes about 30-45minutes.
I will arrange this for you.
After today you have at least two more treatments.
If everything goes well,
after 6 cycles of chemo,
you will still need 4 treatments of Rituxan every six months.
For two years, 4 weekly treatments."

At first, I was very dissappointed by the 2 year thing.
But really, it makes perfect sense. I was told in the beginning that
"Lymphoma is hightly treatable, but not very cureable."
So it is my understanding, that this will be a way to maintain my health,
and keep the cancer at bay.
Plus right now I’m on 4 different drugs when I go for chemo.
In the future, I will only be on one drug, Rituxan,
I can handle that.

On to the treatment:
Poke, poke, poke, poke, poke....still nothing ;-(
The poking part isn’t so bad, but when they stick the needle in,
and then go fishing around for the ever elusive vien, ugh!
Suzanne and I actually had to go outside and take a break.
Outside in the sunshine, my viens look killer,
but then as soon as we go back in the cancer center,
they all vanish. They keep it cold in there.
Suzanne and I Thumb Wreaseled,
once back inside, and
Nurse Linda (who I'm not fond of at all)
got my vien on the first try, right where I asked her to try. yay!
Linda has redeemed herself, she can be my new favorite nurse now, lol.
It took almost 2 hours to get the I.V. hooked up.
Unbelievable!!
We didn’t get out of there till almost 6pm!
Next time will be easy, I will have a port by then.
Last night was no problems at all. No heartburn, no anything ;-)
My muscles fell like I been running laps, thats to be expected tho.
Additionally, once I have the port, and have to go for my routine
NF2 MRI's, they can stick the contrast solution in the port, rather then a vien.....cool.

HEAT WAVE....

2007-08-21T13:29:00.000-07:00

I haven't updated this because there really hasn't been much to tell.
Plus, its been way too hot to sit here at the computer.
I've been sleeping good at night, w/o the sleeping pills.
The night sweats aren't happening nearly as much as they were.
Also, near the incision site, where I had the lumps removed, there was this other lump that was a couple inches away, and was very small, but was there.
Well guess what? I was feeling around for it yesterday, and it just is not there; it's gone. I wasn't imagining it being there in the first place, I could feel it. I made Geo feel it. I made Corky feel it. It was clearly there, and now it is not. That has gotta mean the chemo is doing its thing? I will see what Dr. Zu says about this. I see him, and go for another round (ding!)
of chemo thursday.

Nice day....

2007-08-07T11:49:00.000-07:00

Last night was a night sweat. I slept well tho.
Today is gorgeous outside. I took Zepplin for a nice walk, I was dragging my feet to get out the door, but once I was out there, I was glad we went.
Did us both good.
Yesterday I took the last dose of my post chemo steriods. I hate those things, but suprisingly they didn't seem to affect me the way they usually do. 'Roids usually make me physically feel like wonder woman, and mentally feel like....Sybil? hahaha Maybe my body just got used to them? Who knows?
It's nap time.....sweet dreams.

Chemo: round #3

2007-08-04T09:46:00.000-07:00

August 2nd was my 3rd chemo treatment.
Before they started the treatment, I met with Dr. Zu. We discussed how I've been feeling in the last 3 weeks. He viewed my daily log of effects, and we talked about the fatigue I've been experiencing, my lack of energy. He offered to lower the chemo dosage, which I declined. I told him I want to hit the cancer hard! I can tolerate the fatigue. He was pleased by that.
Then they started treatment, which went well and seemed to go suprisingly fast! Suzanne was with me all morning, then she left to go run errands, I finished my book, and when she returned to get me I was all done and ready to go! Quick day!
I got home just before Geo who walked in with a huge and beautiful bouquet of lillies for me. ;-)
Then at 2 am, I awoke just feeling horrible! Really bad heartburn, the kind that fills your mouth with yuck stuff (acid?) and you gotta spit it out.
Did I mention I had the hick-ups? Very persitant ones, hick-ups and heartburn are not a good combo. hahaha
Plus trying to lay in bed with this happening was not working, everytime I'd get the 'mouthful' I'd choke. So I got my blankie and spent the rest of the night in the bathroom, on the floor, leaning againt the wall, in front of the toilet so I could spit that junk out. (gross huh? well I'm trying to keep an honest record of this experience so...)
Thats where Geo found me at 5 am, snoozing in the bathroom.
We arranged the pillows on the bed so I could sleep sitting up, and placed a bucket near the bed. He left for work and I snoozed the day away.
So.....the night of the 3rd chemo treatment was by far the worst so far.
Still, things could be a whole lot worse, I could be puking my guts out and bald. But I'm not, and I still have my hair!

Better

2007-07-30T12:13:00.000-07:00

I feel alot better. Been doing alot of reading. Right now I'm reading a novel by James Patterson. He is such a good author!
Today I went up to the nail salon.
My nails were just starveing for attention. (So am I, but thats a whole 'nother story) Anyway, my nails look good.
Thursday will be 'round 3' of chemo. I wonder if it's working? I think I mentioned that after the 4th chemo treatment, they will redo the scans (CT & Bone marrow biopsy) to see if I am winning this battle. I bet I am. Heck, I bet the bitch (cancer) won't even show for the fight! ;-)

Well, I guess

2007-07-25T09:26:00.000-07:00

It's about time I updated this I have attempted and intended to write this a few times, but I sat in front of the keyboard, stareing at a blank page, and I just lose interest. I have no interest in anything. Everything I do requires a major effort it seems. That includes showering, eating, etc. I just feel beat.
I haven't walked Zep in days. Poor dog. Just no energy whatsoever. I keep zoning out too.
Lost in space feeling.
I been spending all my time laying
in bed reading. And napping, and reading, and napping, etc.
The good news is I still have my hair! The texture has completely changed, but it is still on my head.
I've had no nausea at all.
Bottum line, I have had a very easy time going thru this chemo, as compared to how bad it can be.
That being said, I FEEL LIKE CRAP!! haha ok I had to get that out.
I am sitting at the kitchen table typing this on the laptop, Zepplin is laying by the front door, watching me.
I can read his thoughts....."WTF? What happened to my walk?
snap out of it! LET'S GO!!"

Steroids...

2007-07-14T10:32:00.000-07:00

I am back on the 'riods. I take 100mg., for 5 days, following every chemo treatment. Ugh! I can't stand the way they make me feel. Mentally, emotionally, they make me very sensitive and borderline nasty.
Inside my head, I edit every little thing I say, before I say it.
Roids make me pessimistic, very cynical and negative, with a very short fuse. Thoughout the day, little things that can go wrong, make me want to scream. Little petty nothing stuff; stuff that usually just rolls off my back,
seem to snowball, when I'm on 'roids.
I'm already high strung, always have been, I tend to run a little hot most of the time. You can't put out a fire with gasoline. My personallity just does not mix with steriods.
So, I am aware of it. I will continue to walk on eggshells inside my head,
and keep repeating my steroid mantra, which is: LET IT GO, LET IT GO, LET IT GO!

Here is a perfect example of my 'chemo-brain':
I looked endlessly for my keys today. Couldn't find them anywhere.
Right about the time I was ready to have a major temper tantrum, and just give up looking, I found them. Guess where they where? Hanging out of the deadbolt on the frontdoor, right where I left them when we came home last night. They hung there all night......opps!

Chemo - round #2

2007-07-13T10:06:00.000-07:00

Yesterday was my 2nd chemo treatment, it went very well.
First stop was the lab, where they draw a blood sample.
Next stop was to see Dr. Zu. I keep a log, (since 1st staring chemo) as to what kind of night I had, and every morning I jot down side effects, reactions, etc. It is just a very brief but detailed record. Only one page long. I presented this log to Dr. Zu and he found it very helpful.
He was very pleased with my overall health,
and my (non) bad reactions to chemo. He said that my reactions, which have been minimal, is a very good sign. It probably means the chemo is working. After I have 2 more treatments, we will repeat the CT and bone marrow tests, to see exactly where my cancer stands. (or doesn't stand - if cancer was a person, I picture her knocked on her ass! lol)
Now onto the treatment room. Unfortunately, Rebecca, my (veins) favorite nurse, was not there yesterday. How sad. It was literally hit and miss, 3 times. BOO! I had been there since 9:30 and it was 11am by the time Nurse Vicky got the IV started! Yay for Vicky, she is my new favorite nurse. I was starting to get seriously frustrated, and once again, it was the spot I insisted they use, and it worked.
I know I can get a 'port' installed, to make this easier, but that is another procedure, and so far I just want to tough it out.
Thank the heavens Suzanne (my guardian angel) was with me to keep me distracted and laughing. She has been a rock for me and I am blessed to have her as my friend. ;-)
Once I got settled in, Suzanne had to scoot, to run some errands. I had my trusty lapyop, and a paperback book, which I can hardly put down. Its a novel by Danielle Steel, she just cranks them out!

Interesting people at the Cancer center. Most of the people just cozy up with blankets and recline in their chairs during treatment. Some of these people look really sick. In the chair next to me was this person who was totally bald, no eyebrows, no head scarf, no hat, no wig, no makeup or earrings.
I just assummed (never assume!) this person was male, and it was only when she stood up to go use the restroom (yes, you roll your IV stand with you) I could see she was a woman. She looked about 35 or so, with kind of a mocha complexion, mexican decsent I think. She had this glow about her. I can't explain it. Very magnetic. I introduced my self, her name was Margaurita. We talked. Of coarse I wanted to know about her hair. She lost it 3 months after starting chemo, that was 8 months ago! She said it grows in patchy or not at all in some spots, so she just regularly shaves her head. I asked her, "No wig? no scarf? ever?" She told me she wears a scarf to grocery shop, or when her head gets cold, but thats it. Her answer was very simple when I asked why. She said "I am very comfortable in my own skin." Wow. I'd opt for a nice scarf and earrings I think, maybe even a wig. Still, I was very impressed by her answer. Oh, and her age? She is 54!

Now next to her was this man who was only there about an hour.
His chemo was short. Lucky. He looked like the guys on the Gieco-caveman ads on tv, or Grizzly Adams! Full head of thick brown hair, hairy chin, thick side burns, hairy arms, hairy chest, I pictured his back as being all hairy too, eeeew! lol!

So my point is, the chemo can run the full guantlett, it effects everyone differently. So far, I have been really lucky.

my nails....

2007-07-09T11:59:00.000-07:00

I guess my nails aren't growing. I wear acrylic nails. I usually go into the nail salon every monday, for a fill. That is the area right next to your cuticle, as your nail grows, it creates a little gap area and they fill it with acrylic. My nails grow pretty fast, I get the length trimmed, and I always need a fill once a week. Not this week. They just aren't growing. Lets see.....my last visit to the nail salon was June 30th. Wow...thats a long time, my nails look like they were just done.

I usually run the razor over my legs (just the knees down) every 2 or 3 days, at the most or they start getting stubble. It has been like 8 days and my legs are atill as smooth as the day I shaved them.

Who knew chemo could be so freakin' convienent! blah....

not yet!

2007-07-06T09:17:00.000-07:00

oh no.....on July 4th we went out to breakfast, I was looking at the menu and I realized I was looking at a big ol' clump of my hair ;-(
Then later that day another clump of my hair fell out.
I can't see any bald spots, I think it came from the back of my scalp, underneath, at the hairline. Yes, I knew this was going to happen,
but that doesn't mean I want it too. Depressing.
I also have a sore on the inside of my mouth. I was told that may happen too. Sigh....
I'm still cooking and eating everyday, but I think I've lost a few pounds.
I don't even own a scale, but I can tell by the way my clothes fit.

I think I'll go outside and play around in the garden, plant something, trim something, whatever, that always makes me feel better.

Dreams.....

2007-07-03T11:25:00.000-07:00

Really weird dreams, just crazy weird. Not scary or anything, very entertaining tho! I'm pretty sure thats from the sleep med I've been taking.
I really have had no effects from the chemo to write about.
I do feel more fatigued than usual and my body feels sore.
Like tired muscles. I do feel mental effects tho; spacey, forgetful, and slower thought processes in general. Its like my brain is tired. Maybe it is....lol, 'chemo brain' they call it, and I've definately got it. I do not like that feeling at all. ;-( I usually have a mind like a steel trap. They say this is temporary.....good.
Speaking of temporary.....in my research I learned that one of the side effects of chemo is "a temporary hearing loss", it goes on to say that "if you experience hearing loss, be aware it is only temporary, and your hearing will return after treatment ends" OH JOY!! I'm going to get my hearing back! Right on dude!!
(yes I know, I'm not serious about getting it back, I am being very sarcastic, I couldn't help myself)

Hmmmm.......

2007-06-30T11:45:00.000-07:00

I feel pretty good, really good in fact. I keep waiting for the 'other shoe to drop', if you know what I mean. Other that being more tired than usual, I really have nothing to bitch about.
I read that one of the side effects of chemo, is unexplained or easy bruiseing. I may not have read that correctly, I'll go research that in a few minutes.
I have this big (about 3") bruise between my wrist and my elbow on the inside of my arm. It's not one of my many dings n dents from doorways etc., from the nf2 balance. When those appear I usually know exactly when the collision (?) happened. I have no idea the cause of this bruise.
hmmmmmm......

This is what I just read....
Bruising or bleeding: Rituxan can reduce the production of platelets (which help the blood to clot). This can cause unexplained bruising or bleeding, such as nosebleeds, blood spots,rashes and bruising on the skin, and bleeding gums.
So thats where I got that bruise...MYSTERY SOLVED!

1 week down...

2007-06-28T22:33:00.000-07:00

since starting chemo, 17 weeks to go.....yikes...putting it that way seems awfully long.
In this past week, I have experienced heartburn, which is under control by Pepcid.
I also had horrible insomnea, but that is under control now too, due to the Temazepam. I have had no nausesa, so far, lets hope that keeps up.
I have been awfully tired. I spend alot of time reading. Thats kind of frustrating, sometimes I'll read an entire page, and realize I have no clue what I just read. So I read it again.
I seem to have whats known as 'chemo-brain'. Usually I am sharp as a
tack, never miss a click you know? Lately certain things are just a blur.
Simple things, like everyday routine things that I do by habit; checking the snail mail, watering the houseplants, making grocery lists, etc., All that kind of stuff is like 'o yeah, I need to....' You get my drift.....
I will say I am on top of the laundry, thats pretty funny, I hate doing laundry, and I always put it off. But with night sweats, at least a few times a week, I change and wash all the sheets, p.j.'s, and whatever else needs washing. So for the first time in my life, the clothes hamper is usually empty, instead of over flowing.

Insomnea

2007-06-27T11:19:00.000-07:00

I've had really bad insomnea for about a week.
Try as I might, I just cannot fall asleep at night.
I tried cutting caffiene, sleepytime tea, etc., nothing was working.
So yesterday I emailed Dr. Zu, to ask for help. He prescribed something called Temazepam and OMG I slept so good last night.
I didn't wake up once the entire night Man, what a difference sleep makes!
I have not had any severe side effects. No nausea, and the heartburn is controlled by the Pepcid. I have been awfully tired. It was absolute bliss last night to sleep!
Life is good.....

1st treatment - part 2

2007-06-22T11:28:00.000-07:00

Yesterday was a very long day.
Treatment started at 9am ,I wasn't done until 3:30.
First things 1st, Nurse Linda started an I.V. , or tried to anyway.
I showed her the best spot to use, which of course she did not agree.
So after 3 strikes (ouch!) she was out. Luckily Nurse Rebecka saved the day, 1 poke, right where I showed her, no problem
Rebecka is my new favorite nurse ;-)

The treatment room is like a big living room, filled with recliners and couches, tv's and magazines. They encourage you to bring a book, a laptop, friends to quietly hang out with, snacks, drinks, etc.

Suzanne went to the treatment with me, we chatted for awhile on my laptop, until the battery died. (4 hours)
Then she went to get lunch and brought back carnitas burritos from Rubio's Mexican Grill. It was soooo good. I think thats my new favorite place to eat. ;-)
Today at noon, her and her family went to Italy. 19 days they will be there.
ciao!

About half way thru the treatment, I was given some Rx'es to have filled.
One for nausea, one for heartburn, one for something else. And one for pednisone...yes steroids. Yuck! Steroids are evil, I hate steroids, can u say 'roid rage'?
So I told the nurse, no way, I'm not taking these, why do I need these?
Dr. Zu said nothing about steroids. So she took the paper and dissappeared, I'm thinking, cool, that was easy enuf.....wrong! Here comes Dr. Zu to explain to me that I must take these steriods, only for 5 days tho.
That is, 5 days following every chemo treatment.
Well, ok then, if I must, I must. I still say steroids are evil tho....

My leg muscles feel like I have been running laps. Legs feel very fatigued.
weird, I sat in a recliner all day yesterday.
No nausea, as of yet. Insane heartburn tho, and a little insomnia last night. No biggie, I slept in ;-)

Not sure what I was expecting, but yesterday was not bad at all.
My only complains were the I.V. situation, and the knowledge of the 'riods. The 1st treatment is history.
bark~!

1st Treatment

2007-06-20T16:10:00.000-07:00

yay! I start my first chemotherapy treatment tmw at 9 am!
Who would have ever thought I'd be excited about that?!
But I am tho, very excited, and a tad nervous,
thats normal I guess.
Finally! I get to start! Wish me luck!

WTF ?!

2007-06-19T10:50:00.000-07:00

Dr. Zu has yet to call the insurance company
with a protocol. (treatment plan)
WTF? Can you believe this...the doctor is holding things up? I cannot understand why. Karen (my case manager) thinks that he may not have decided on a protocol yet. He told me that the protocal would be the same as he said two weeks ago.
All this time I thought the delay was the insurance peoples fault....obviously, it is not. Turns out it is the doctor.
Unbelievable!

Now it is much later, I emailed Dr. Zu, he responded within the hour.
He said,
"I have asked my office to get authorization last week. I just checked with the girl who does auth, she is working on it. She told me we should be starting treating you this week."
So I don't think the delay was actually him, but rather his office.
Tmw is another day....

Fathers Day

2007-06-17T12:51:00.000-07:00

Last night was not so good.
I tried & tried, but could not fall asleep....last time I looked at the clock it was 3:30 am, still no sleep. groan! Then once I finally dozed off, I awoke to find myself completly drenched! yuck - gross! I hate that! sigh...
The plan was to go to Huntington Beach, to Geo's folks house, but I just was not up to it. I suck! So I sent him on his way solo.
Tmw I am calling Karen King, my case manager. She is going to help me arrange some services, that I may need while undergoing treatment.
I got the cancer dx's i month ago yesterday.

HURRY UP & WAIT

2007-06-14T11:01:00.000-07:00

Yesterday i had an appointment with Dr. Zu.
(Suzanne took me to the appt., and Geo met us there)
Dr. Zu used my laptop to communicatte with me.
We discussed the results of my recent tests:
CT Scan - negative - it basically didn't reveal anything new.
Bone Marrow Biopsy - positive - the 'C' word is in my bones.
Dr. Zu said this is 'common' with this type of Lymphoma.
Plus, it wasn't a huge surprise, I was already told its in stage 3.
What I really wanted yesterday, was to get a plan of attack, er treatment,
schedualed. We cannot do that until the insurance approves it.
Thats another 7 to 10 days. Suzanne has Kerri (caseworker)
trying to rush the approval.
(note to self--think positive)

Biopsy

2007-06-12T10:22:00.000-07:00

Yesterday was the bone marrow biopsy,
everything went smooth. I was dreading it,
but it was a piece of cake.
First they started an IV line, so they could sedate me during the biopsy.
They took the bone marrow from the back of my hip bone.
They had me lay on my tummy on the mri table, and with the machine they looked at my hip bone, so they could see exactly where to poke, to get the marrow. So, I'm laying there, bracing myself for the pain, and there was no pain. I was forewarned I would feel a 'twinge' while the marrow was being sucked out....no twinge tho, nothing. yay!
At home I slept the rest of the afternoon. The area is a little sore now but just a little.
Next up...appointment with Dr. Zu tmw, where he can review this test result and finalize my treatment plan.

CT Scan

2007-06-04T14:45:00.000-07:00

Today was that Cat Scan, I wish MRI's were that easy.
The CT cocktail was Barium (a contrast agent)
which I drank so that worked on my digestive system.
Then I also got an injection of contrast for my curculitory system. Like I said, the whole thing was a breeze, maybe 1/2 hour or so.
Next up, bone marrow biopsy, and after that I will start treatment. I am ready now to start treatment. The first step to getting this behind me and getting thru it, will be starting it, right?
Bring it on! ;-)

1ST ONCOLOGIST APPT.

2007-05-31T12:25:00.000-07:00

The text that follows are Dr. Zu's words. He was a nice man.
We used my laptop to communicate.
My Guardian Angel Suzanne took me to the appt,
Dr. Zu made me the focus, and conversed with me,
via the laptop. Which was wonderful.

"YOU HAVE FOLLICULAR NON-HODGKINS LYMPHOMA.
YOU HAVE B CELL. THERE ARE TWO KINDS OF LYMPHOCYTES, B AND T CELLS.
YOU HAVE A TYPE THAT'S VERY TREATABLE, BUT MAY NOT BE VERY EASY TO CURE.

YOU WILL NEED A CT SCAN AND BONE MARROW BIOPSY.
THERE ARE 4 STAGES.
YOU ARE STARE 3 OR 4.
THE TEST WILL DETERMINE WHAT STAGE.
YOU WILL NEED
CHEMOTHERAPY.
CHEMO WILL BE COMBINATION OF RITUXAN, WHICH IS AN ANTIBODY, IN COMBINATION WITH CHEMOTHERAPY.
IT WILL BE GIVEN TO YOU ONCE EVERY 3 WEEKS FOR 18 WEEKS.
IT WILL BE GIVEN TO YOU THRU AN IV.
YOU WILL LOSE YOUR HAIR,
PROBABLY WILL BE A LOT THINNER.
OTHER SIDE EFFECTS ARE NAUSEA.
NAUSEA USUALLY IS ON THE NEXT COUPLE OF DAYS AFTER CHEMO. "

All in all, it was a very good appt.
Dr. Zu made sure that I understood that this cancer is very treatable and not urgent.
Also, at the appt, a nurse drew some blood. She was very good and asked me where the best vien was, I showed her, and she got the vien on the first try.
Monday morning is my CT Scan. I will have to drink some contrast concocktion bf the scan, weird huh?
"Can I get that on the rocks please?" ;-)

All in the Details.....

2007-05-29T23:09:00.001-07:00

ok.....the exact dx is :
Non-Hodgkins Lymphoma B Cell.
Tmw @ 3pm i see an oncologist for the first time.
The docs name is Dr. Kai Zu.
Male or female? lol ur guess is as good as mine!
i'll let u know.....

Treatment will be at the Grossmont Cancer Center,
in San Diego

the exact dx

2007-05-29T23:09:00.000-07:00

I was told i have Non Hodgkins Lymphoma B Cell.

Tmw is my first appt with an oncologist.

The docs name is Dr. Kai Zu....

Does that sound like a male or a female name? lol~!

i guess i will let you know......

My Lumps

2007-05-29T22:59:00.000-07:00

not good at all......
remember those 5 lumps i had removed? (05/03/07)
they sent them to the lab.
today (05/16/07) was my follow up.
i have Lymphoma - Cancer of the lymph nodes.

she said i will need:
1. to see an Oncologist, she will refer me.
2. Chemotherapy
3. Cat Scan to look at other Lymph nodes.
great....

i asked her basically wtf lol,
as i was so sure these lumps were just an 'NF2 thing'
she said
"Neurofibromatosis type 2,
causes DNA instability and puts you at risk
for some types of cancers." Dr Chelsea Hardin

dang.....KC