Friday, April 24, 2009

who needs it?

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

Monday, April 6, 2009

Life is Good...

Dr. Slattery reviewed my MRI films with his team:

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

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

So that is good. No surgery, yay!

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

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

Thursday, March 12, 2009

The Good - The Bad - and The Ugly!



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

The Bad:
Dr. Slattery said that the
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!)


Thursday, February 26, 2009

Mind Over Matter...?

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

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

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

Wednesday, February 11, 2009

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!


Friday, January 23, 2009

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.


Tuesday, January 6, 2009

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.....