Chili! Chili! Chili!

Boy is it good to eat home made Lamb and Duck Chow Fun with a ton of Chili sauce slathered all over it...and no pain or problems!

Sorry, had to do it. Hey, it's the little things that count. Have a good weekend. Off to the Ren Faire tomorrow. Now what to be; a brigand or a pauper?
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And The Winner Is...

The traditional scalpel and the Cyberknife!

Robin and I spent a long and fruitful day in Redwood City on Thursday consulting with the Neuroscience team (a fabulous group BTW). The approach that we have settled on is a Craniotomy (next Thursday 9/18) to go in and remove the tumor. After a suitable wait of 10 to 14 days then I will be off to the Cyberknife facility for a thorough nuking of the tumor bed (e.g. the place where the tumor used to sit). The hope is that this will remove everything that we can see. Then off to MRI every 2 to 3 months to watch and see.

Depending on whom I talk to, the hospital stay will be 2 to 4 days. Of course, back when I had my Laminectomy done I was such a pain that after only 45 minutes on the unit the nurses were stumbling all over each other to contact the surgeon and get me discharged...so much for the projected stay of 6 to 8 hours for that! A good patient I am generally not!

That brings me to the big issue of the day. The kids. They still don't know everything that is going on--although my son told me that it was good to see me eating again--but they are starting to get that something is up. Wednesday we are going to keep them out of school and sit them down for a simple talk about Daddy's short stay in the Hospital. Then Robin and I will spend the day with them and try to keep calm.

I am not sure how we will be handling the long term follow-up and treatment for the brain mets. The possible and probable side effects of whole brain radiation frankly scare the piss out of Robin and I. I kinda like my brain functioning in a (mostly) un-demented state. For know, we will hold off on nuking eveything in sight, especially given the fsct that RCC is one of the most radiation resistant tumors out there.

We also had an appointment with the Med ONC today to go over the CT results. We are both happy with them, so I will be restarting the Sutent ASAP. That will have to be coordinated with the Neursurgeon and the Neuro ONC after the surgery, so the better news is that I get to eat properly for a few more weeks! More long term we are now looking at removing the primary after the Neurosuurgery, but will probably have to do 2 cycles of Sutent first.

Speaking of eating, a friend had dinner delivered to us Thursday night; boy did that save us. We had expected to be home to the East Bay by 2pm at the latest. Instead we rolled in the door around 530 and the food was here within minutes. Thanks again Lynn!

Man, but these roids are pissing me off! The regurge is just a pain and the emotional swings are driving me bonkers. Robin keeps telling me that I am talking and acting like somebody wired on crank. Maybe she's right. After all, I am typing this up at 350 in the am! About the only good part to the Decadron has been the massive return of my appetite. Not sure how many calories I have gone through this week, but all of the 7 lost pounds are back (and then some). I find that I need to eat a full meal about every 4 hours or I get rather cranky and the regurge gets bothersome. I wonder if this is how the holly-weird types bounce their weight up for their roles? And my impulse control! Look out! Anything is always a good idea, screw the thoughts of consequences. Ah well, this too shall pass.

Robin and I are off to UCSF on Monday. Their Urological Oncology team has discussed the case and they want to start us off with their Medical ONC first. Yet another day spent in a clinic...But it is for a good cause. Knowledge is always power.

The family is all coming a-running next week. I am so grateful for everything that they and our friends are doing for us. It looks like we will have someone here every day for 5 or 6 days to help Robin with the kids and stuff, so that is a great relief to me. And, I am sure, to her.

What else to mention? Is it a good day today? Well duh, you're breathing still aren't ya?

I think I'll just leave it at this: Most of us walk through life without realizing the effects that we have on the other people around us. I count myself as one of those people, as I can be rather oblivious at times. The last three days have given me the opportunity to read and learn about the effects that I have had on some of the people around me. For that I am deeply grateful, very humbled, and damned proud of each and every one of you. You were, and are, the best of the best. I miss you all.

Be well. Time to try and catch a couple more hours sleep. Busy day with the family coming up.
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Busy Week So Far

OK, a bit to say and not much time this am...

First off, to all of the team that we were with in ROS last night. If I missed talking to you, I am sorry for that. You have now idea how much it meant to me to be able to be there and help show our appreciation to the REG team. Thanks again for the invite and everything else.

During dinner last noc I got a call from the Med ONC...here is the gist of the call:

CT SCAN RESULTS

To:

Francis

Received:

9/10/08 7:17 PM

Hi Francis,
Here are the scan results.

There has been significant interval decrease in the size of the
visualized pulmonary nodules seen previously, the largest in
nodule seen presently measures 8 mm (from previously 10mm) in gr
dimension and is closely associated with right upper lung
vasculature. A pleural based density in the posterior right upper
lobe has not changed significantly in size. Mediastinal and
bihilar adenopathy has also improved, the largest conglomerate in
the right pretracheal area has improved from 31 x 36 mm tube
presently 22 x 28 mm.

The left kidney mass has minimally decreased from 9.5 x 8.4 cm to
presently 9.0 x 8.6 cm.

Significant interval change in the size of the right L1 transverse
process lesion or in the retroperitoneal adenopathy is not seen.
The right kidney lesions are not well compared due to differences
ion enhancement timing.

** IMPRESSION **:
Stable retroperitoneal adenopathy and L1 lesion.
Minimally smaller primary in L kidney
Significant improvement in pulmonary nodules

So, some good news this morning as I wait for the rest of the family to wake up. Speaking of which, I can hear Caitlin stirring in her bedroom. Time to wake up the house and go to the Neurosurgery appointments. First "performance" is at 9am.

Good day to all. More to say later, but wanted to get the news out for the folks across the pond before they go to sleep.
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Radiation vs Surgery vs Both

Had a long appointment with the Rad Onc on Friday. She is recommending that I have a Neurosurgical evaluation (scheduled for Thursday) of the brain tumor. If it is non operable she will recomend that I go to UCSF for CyberKnife or Gamma Knife therapy. Whatever is used as the primary attack on the tumor, she is also recommending that I undergo "whole brain" radiation therapy in an attempt to kill off any little critters running around up there. It does not sound like fun--the side effects can be rather fierce--but the options don't sound like fun either. Woo Hoo, daily doses of radiation for a whole month! I'll really glow in the dark.

According to the MRI the tumor is 10mm x 9mm x 8mm and in the Left Parietal lobe, near the surface, and surrounded by a moderate amount of swelling. None of the docs think that the headache was caused by the tumor, but now they know it is there and have to treat it. So, the Decadron as a first step. The Rad Onc suggested that I start at a half dose on the Decadron, given my history with Prednisone--it basically drove me insane--so God knows how bad the side effects would be on a full dose.

The Decadron is doing it's usual thing to me...messing up my sleep patterns and giving me horrible indigestion at around 12MN every night. So I am back on the Prilosec full time, but little help so far.

Spent some time with the family last noc. It is pretty hard to talk about things with the kids around, but we managed to get some of it across.

Robin and I have basically decided that all of this new news means very little. We knew that we would be up against the wall; this latest just makes that all the more clear. She remains strong and patient. I have no idea what I would do without her.

We received the packet from the Medical Onc on Friday to take to UCSF for the second opinion, so now I can make the appointment ASAP.

I received a couple of cards and emails this week; thanks to all who sent them. It truly does help. Thanks.
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Damnation!

I was going to talk about some other stuff today, but somehow I have lost the motivation for that. Just got a call from the Onc. The MRI showed a 1cm lesion in the left parietal and some associated swelling. They also found a 2 or 3mm area that "might" be a recent bleed or a calcification. Oh joy. I am to start Decadron tomorrow morning. The doc is also putting in consults with a Radiation Onc and a Neurosurgeon.

Needless to say Robin and I are not in a great space right now.

Thanks to the team from work today for lunch. It was great seeing all of you!
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