The Good - The Bad - and The Ugly!

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

The Bad:
Dr. Slattery said that the 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...?

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....

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.