Marathon & stuff...

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....

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

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

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."

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....

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...

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....

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.

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....

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.

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!

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!

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...

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....

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

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....

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....

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.

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

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

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.