I NEVER HAD ANY DOUBT....

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...

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....

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...

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."