My First Older Woman

No, this is not going to be about what you think it is. Well, not only that...

I had some rather odd dreams last night, actually more like a night terror. I have noticed that I get them if I try and take anything (like Restoril, etc) to help me sleep when the steroids are keeping me up. You think I'd have figured it out by now. Four different attempts with sleepers and four night terrors. Sheesh. Easier to just stay up all night.

So during the wee hours of Sunday morning while I was being annoyed and wallowing a bit I ended up thinking about my first "older woman". Now, before you go and get worried, realize that we are talking about a boyhood crush here. Nothing else. Just a kid of about 10 years old trying to act like a grown up (at least, I thought so at the time) and be a "big boy". Of course, at 10 that means that you show your affection in rather playful ways, and tend to end up causing a bit of a stir now and then.

My first memories of this older woman are of a tall, blazing-red haired, pale woman with an easy smile and laugh who obviously adored and doted on my mother and father. Of course she also adored all of us children and spoiled us rotten.

I remember one night, around Christmas--maybe even after Christmas dinner--when this woman taught me that it is not appropriate to playfully slap a woman on her posterior. Especially not when she is old enough to be your mother!

I remember sneaking into her room one afternoon and putting "cigarette loads" into every single cigarette of hers that I could get my hands on. (For those of you who don't remember, cigarette loads were about 0.5cm long and the diameter of a toothpick. You stuffed them into a cigarette and they would explode when the cigarette was lit). Needless to say, that evening there were a few explosions; some chemical and some emotional. I sure got my butt tanned for that one...

Above all, I remember spending time with a friend. One of the first adults that I thought listened to my childish but oh so important opinions on anything.

I remember a woman who cared for us all; smooth as silk, tough as nails, and always willing to stand up for what she believed. No wonder she became a nurse.

These days her hair is a mite bit whiter--heck, mine is grayer--and she seems much shorter, but she is still my first "older woman" whom I will always love and cherish.

So where am I going with this? Both of us were in the hospital last week; but while I came home, my aunt is still in the hospital in Dublin. Aunt Noelle, I just want you to know that we are all pulling for you, we wish you well, and we miss you terribly. Get well soon and God Bless.

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Mailing List Form Now Functional

It is a quick and dirty form, but it will work to get the requests to me, and should be immune to Spam Robots.

Located at the bottom of the page for now.

/EDIT 2055/ Form moved to the left side of the page as I was able to source a smaller one.
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Google Groups Mailing List

By now many of you should have received an invite to a Google Groups. I am tying this group to the Blog, mainly to use the mailing list features. I also opened the group to members only, since I have to open it to something/someone by the terms of the agreement. Membership is locker, privately held, and by my invitation only.

Let me know if there is anyone who wants to be added to the list.

Enjoy and Be Well,
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Treatment Plan Update

Well, went in today for a few things. The day actually started yesterday afternoon with a call from the MRI folks--they were trying to get me in ASAP for the special Closed MRI that Stanford needs before the CyberKnife therapy next week. There was bit of confusion, because my records now read "claustrophobic" so they try to do everything with me under the "Open MRI", rather than in the older "Closed MRI". You know, the coffin tube. So around and around and around with the schedulers until I got frustrated and just called the Neuro Science team and asked them to kick some butt. Boy did they. Seems the NP and the MA from the NS team got frustrated as well, so they pulled in their Chief to raise a little cain. Next thing I know I got a call at 1045 this am from the MRI trailer asking when today would be good for me! Showed up at 1130, right into the coffin tube, and the special MRI scans were done. Oof, 3 mm cuts instead of the usual 5 mm cuts. Took a Long time. Gotta love that Xanax. I actually fell asleep for the last 20 minutes or so of the scan!

For those across the pond: think of an MRI (or a CT of that matter) as taking planar views (cuts) through a structure. For many of these types of scans the cuts are spaced every 5 mm. They can be done top to bottom, side to side, etc. Taking 3 mm cuts effectively doubles the number of "pictures" so it takes longer and has the advantage of offering better views for some tasks. Also, the Closed MRI truly looks like a tube, you slide into it instead of under it. The main advantage is that the spatial resolution and detail are much greater. The Open MRI is like lying between two huge metal pancakes with open sides, but the spatial resolution and detail is decreased. Much more comfortable though.

After the MR we ate a great Vietnamese lunch (Pork Bo Hue and Shrimp paste sticks: spicy pork soup and shrimp paste rolls on a stick), then raced back to the Hospital to have the staples out and a surgical consult on removing the "barometer" lesion at the back of my scalp.

The staples are now out and replaced with SteriStrips (why bother? The strips are stuck to the hair and not the wound. Not like they are doing anything). The wound looks great and is healing well.

The general surgeon will have me back on 10/9 to remove the barometer lesion. It is currently at 1.5cm x 1.5cm x 0,5cm, as I measured it on the MRI. Gotta love electronic records, I have a disk of today's MRI so I used it to examine the scalp lesion dimensions and extension. Much easier than trying to use my fingers at the back of the head.

Recup from the craniotomy continues to go pretty well. I managed to walk up to the kid's school after dinner tonight, and only needed a brief rest on the way back. Maybe by next Monday I can start bringing Sheba along again for the evening constitutional. Still foggy at times, but that is to be expected. Boy was the drive down to Hayward a rush! First time driving myself since the surgery, so a bit different (Robin was golfing in the hills, no cell phone coverage!)

Got the pathology results from the crani, they look a bit odd and are being sent out for a second. But, they did show persistent necrosis (death) in the tumor, so the chemo did have a good effect.

The current plan is to restart the chemo about 28 days post operatively, no calendar in front of me, but that would be around October 17 or so. Looks like we get to take the family vacation at Fort Bragg with me still able to eat. Woo Hoo!

Steroid taper starts today at 0600 hours! Yes, 4 more days and I can drop this crap!

The next posts are going to deal with technology issues, I have had some questions from family and friends, and I have some questions for all of you, so I am going to do a roll-up review and cover all of them at once.

Be Well.

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Responses to Fear, AKA Notes From The Recovery Path

The other day my niece/god-daughter sent me an email. Part of what we have been chatting about was how we each respond to life, and how facing fear is so often a part of recovery and redemption. Some fears are rational, some are not, many are from "future tripping", and most are just a way to avoid doing what we truly need to do for our own good.

So Siobhan passed on this quote to me, as it "really calms" her and helps her out. "The Lord is my Shepherd, I shall not be in want. He makes me lie down in green pastures, He leads me beside quiet waters, he restores my soul. He guides me in paths of righteousness for his name's sake. Even though I walk through the valley of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows. Surely goodness and love will fellow me all the days of my life, and I will dwell in the house of the Lord forever". (Thanks Siobhan!)

I don't think that I'll bother mentioning where the quote comes from; just about anyone should be able to figure that bit out for themselves.

After reading her note, and thinking about her message a bit more, it occurred to me that there is a particular book that I first read when I was about 10 or 12 years old. That first time I only managed to read the first 100 or so pages and I later had to return to it after about 6 months to finish the novel. I can still remember being damned proud of how far I got reading this particular book at my age--and wanting to commemorate that achievement--so I wrote a tiny little hash mark on the corner of the blank page after the title page to show that I did finish it. You see, I couldn't think of any other way to memorialize the occasion, as the book was not mine and I was afraid of getting in trouble for reading it! So I finished the book and snuck if back onto my father's book shelves.

Over the years I have continued to keep reading and re-reading this book--in fact it lead me to buy and read everything this author has ever written--and I am now on my third or fourth copy of the original novel. But, I still have the first copy (yes Dad, I stole it). Old, ratty, an original edition paperback; and now the blank page is covered with the rather astounding number of 74 hash marks. And I am sure that I forgot to add some marks, as often I will read this book for fun and not bother to mark it. But, I still add a hash mark when I read it for a special occasion.

You see, this novel is about all the great changes, choices and actions that we all face in life; and how our training, morals, duty, fears and desires affect and control our actions. It is about how the actions of all of us have oft immeasurable consequences for those around us. For me it became what I call my "life change" book. One of the places that I would go and "visit" whenever I came to a crossroads in my life and felt the need to examine myself, where I was going, and the choices that I was taking. I have all the other resources that we all do--family, friends, religion, morals, etc--but there was something in this particular book that I always identified with and it just pulls me in and helps me to think.

(As a quick aside: In High School as a Senior I took a class entitled "Science Fiction Literature in the 20th Century". Part of our Final Grade for the class was to perform a week long, full blown, mock trial of the novel and it's hero; whom the class charged and placed on trial for Crimes Against Humanity. My "gang" and I took on the roles of the Defense Team and the Defendants--I playing the role of the hero--and prepped our case. We appeared in complete costume, tossed furniture, pulled weapons, waxed eloquent, slayed our enemies, defended our honor, and generally had a blast. We also won an acquittal, The first Defense Team to ever do so in Mr. Alessandri's SFL20C class. At that time we were the only non members of the Debate Team to win a mock trial. Sometimes chutzpa and heart can take the day. Of course, between my "gang" and myself we had also read the book a total of about 100 times, at least.)

It seems to me that there are basically three ways to deal with fear. You can turn in and look for your own answers, you can turn out and look for someone/something else's answers, or you can do nothing and let the fear rule you. Doing nothing has never really appealed to me, so my real choice has been to try and pick the inside or outside answer that works for me. Sometimes I choose wisely, sometimes I don't, Ah well, that is also part of the choosing process, and as long as I don't hurt too many people--and learn to choose more wisely next time--then I figure I am ahead of the curve.

And here, I think, is the crux of handling all our fears and choices. Choose a path you must, or it will be chosen for you. Doing nothing is a choice, and usually a poor one. Not all paths will be easy, choose to do the best that you can. Try to be the one to help and not to hurt anyone unnecessarily. Always, always examine your results for you, those you affect, and the situation. Above all, learn from your choices and apply your new wisdom to your next and choices.

OK, now back to the SF book. The book is titled "Dune" by Frank Herbert. It was first published in 1965, and my oldest paperback edition is from 1977. I still have the '77 because it was our original "mark-up" edition for the mock trial in High School. All our notes, highlights,, strategy and everything. The original edition paperback of my father's that I first read and marked up is even older, I think it is from 1972, but I am loathe to take it out of it's protective case and open it. In Dune Frank Herbert wrote one of the simplest, yet most profound litanies about dealing with fear that I have ever read:

"The Litany Against Fear

Fear is the mind-killer. Fear is the little death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past me I will turn to see fear's path. Where the fear has gone there will be nothing. Only I will remain."

Frank Herbert, Dune, 1965

Why do I bring up all this about a simple Biblical quote and SF quote? Well, because there is nothing simple in the Good Book, a good book, or in Fear, or in Recovery. Redemption is where we look for it, grab it, and make it our own. We truly do own our fears, and our actions. Make them the best of your current wisdom and you can be content with your own choices.

Chose wisely, chose from within or without, but we always have to make a choice.

Be well.

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I Guess Size Really Does Matter

Well, I had Robin snap a quick shot of the craniotomy site this morning after I finally got to take off the dressing and wash my hair. It looks a bit bigger than I expected.

I think I need to buy a bigger hat. :) Read more!

From the Bedside

Had a nice day. The staff here have been wonderful. Just the right mix of attentiveness and letting me do things for myself.

Robin and my father spent a few hours visiting with me this am. My brother also dropped by with an order of Pad Thai on his lunch. That hit the spot! Talking about food; either we have changed suppliers, or the steroids are really messing with me, as the food is not too bad.

Recovery goes well. Some visual disturbances in the right hand fields, but they were expected and not too bad. I find I need my reading glasses to accomplish anything. Good thing I relented and brought them along. Up and about most of the afternoon after the Neurosurgeon came by and gave his OK for the removal of all the various appliances that were plugged into me. Since then I have been basically up and about and left to my own devices. Not free yet, but getting there. Speaking of freedom, I am scheduled for discharge to home tomorrow morning. All we need is the final clearance from the covering Surgeon.

Just finished up with a group of co-workers who came across the Bay after work to drop in. Thanks Guys! It was great to see and talk with you!

Well, time for my evening constitutional. At least I can see the places where I "grew up" outside the windows. Not as good as being there, but still helps this place feel less foreign.

Take care.

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Ahoy There!

Shiver me timbers! It's International Talk Lika a Pirate Day. Aargh matey, that it be!
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Post-Op In RWC

And rather bored. But that is a good thing! Being able to be bored that is!

Went in to the OR at around 1:15 today, and was awake by 2:50 and back into the Recovery Room by 3:00 pm. One of the nurses showed me the tumor that they removed. Looks pretty tiny to have caused all of this fuss. According to the OR crew I wake up fast and happy. Their favorite type of patient.

Best part of the whole experience was getting the chance to touch base with an old school mate. Sandra and I came up through the Nursing Program together--from the pre-requisites through to graduation--and then went on to start our first "real" jobs in the same ED New Graduate program. That was a nice way to spend the waiting time, and Sandra has always been one of the sweetest people that I know.

Well, settling in now. Think I'll read for awhile and wait for dinner. Thanks to all for the thoughts and prayers.

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Talk About Nothing Happening...

Telling the kids was a non-event. The biggest moment of excitement was when they heard that Grandad would be staying in town for a couple of days. That lead them to both vie for the priveledge of giving up their room to him.

Why do I always insist on worrying about the things that seem to resolve themselves so easily? Ah well. If not that, it would be something else.

The beach was a bust--cloudy and cold--so we ended up at The Tech Museum. The kids had a blast and ran about the place all day long. All in all a nice place to take the kids.

Have a good night and back after the surgery. I'll have a couple of toys with me that will allow for some net access.


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Fair Warning!

I forgot to mention that Jerry Pournelle's blog is a tad conservative. But please read it anyway, even if you are a "heathen". He has many thing to say about his treatment that could help us ALL become better providers.
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UCSF Consult and Getting Ready For Thursday

Well, Monday we had the consult at UCSF. Nothing much new or unexpected. Given the tumor status, my primary ONC seems to be charting the proper path, and we are moving as well as can be expected. I had been pushing for a visit with the Surgical ONC, but their Tumor Group decided to start me out with the Medical ONC, so there we started. Man, the paperwork they wanted! Being out of the fee-for-service side of things for 10 years or so, I had forgotten what it was like. Ah well, at least I can remember all the hoops that I had to jump through for for a STAT transfer from the ER to UCSF; that gave me a recent perspective to work from. ER transfers are easy compared to this!

Most of the encounter was training working with the Fellow who was partnered with the UCSF Urology ONC Clinic Doctor/Professor. Been a bit since I worked with an "adolescent" doc. Kind of fun. Didn't realize how much it could amuse me, nor how much I missed it. In the end the Fellow got it right (only 3 or 4 trips to the exam room to examine me. God, were we all like that as students and "fresh meat"?), and then the UCSF doc came in to review the findings and discuss the care with us.

Had a couple of fun moments with the ONC and the Fellow. Mainly around talking about philosophy of care--I described mine as "scorched earth" and wanting to be aggressive. The Fellow got rather pale at that phrase, but the doc seemed to get it. He certainly loosened up, and talked about how it would be nice to be able to do the Craniotomy and the Nephrectomy (Kidney removal) at the same time; so I passed on how I had asked the Neuro folks if they could invite a Urologist in to assist for the procedure on Thursday. The doc chuckled, the Fellow tensed; and Robin chimed in with "He's serious". Then the UCSF doc apologized for being a bit of a "cowboy" and looked rather wistful. I think he enjoyed the banter a bit.

Most of the information was about clinical trials currently at UCSF and also coming down the pike. He also related the latest stats for Sutent (5% Complete Response), and Interferon/Interleukin-2 (about 8-11% Complete Response). Looks like the long term goal of IFN/IL2 is still the best option, which might mean a road trip to Riverside for a consult. Have to look for something closer and push for it. Being away for a week at a time would be very hard on the kids. Screw staying in the "system" if it means hardship for Robin and the kids. BTW, for the non-medical readers, "Complete Response" = Cure. Everything else is just window dressing and "buying time".

Tomorrow we are taking the kids to the beach to play and tell them about the surgery in a relaxed setting. This task duty scares me more than anything else that I have ever done. Not the surgery mind you--that is just a small burr hole, a quick swipe with a router, a bit of cutting and scooping, close it up and drive in four screws to keep everything closed--no fear there. No, sitting the kids down and telling them enough to set them at ease, but not enough to scare the crap out of them. That will be hard. Terrifies me. Robin and I talked it out, we have a plan, and God will show us the way--or hopefully knock me upside the head when it is time to shut up and be "Just Dad" instead of "Nurse Dad". Thank God they saw the wound and the sutures from the initial excision on my scalp. They both thought that it looked "cool" (Oh, to be six again); and it gives them/us a made to order baseline for the explanation.

Found out an interesting tidbit today when we finally took the paperwork in to the bank to convert all our accounts to the Family Trust; it seems that a Trust cannot have and Overdraft Line of Credit on bank accounts. At least, not at WaMu. Ah well, we have structured everything as best we can, and now all is in the Trust name, so the kids are protected as best we can. That is the important thing.

The rest of the last few days have been nice, we spent some time at the Castro Valley Fair and the Renaissance Fair. Did a bit of walking and spending; ate way too much, spent way too much, and bought a few presents for friends and family. Fair warning to Lisa, Ashley and the KPHC crew: I found something to immortalize your "WWFD?" comments and it is in the mail to you. Don't worry ladies, it is fairly cute--at least I think so--and the rest of you will learn more later. I have a picture and the full story to post after the present makes it to E'ville.

Let's see, what else? Books and toys are picked out for the stay in RWC. The WiFi does not seem to be built out yet, so the work laptop stays at home. Connectivity/Web/Something To Do will be limited to the Netbook, iPod and PocketPC phone. That's OK. With those three devices I can get into worlds of trouble fun; and, if nothing else, hack my way into just about anything that interests me. Might be fun to RAS my way into the lab results on my PPC phone and check out the results before/as the nurses get them. Haven't done that in a bit. Have to find out if I remember how. Worst comes to worse, I will be able to use my PPC phone to update the blog and send out an "All clear" for the family and friends. Certainly easier than individual emails; and I just might be able to add a picture or two of the wound. Ooh, goody! Scalp porn!

Contact updates for the week are quite full. A couple of friends from high school found my profile on Facebook and contacted me. Great to hear from them. I really should be writing to them instead of typing this, but I felt the need to vent. Also ran into an old friend: To Bill and the Diablo NSG folks--I miss you all, and it has been great to hear from you.

Well, time to take a walk and crash. Oh, that reminds me. One of my favorite authors is Jerry Pournelle. He has written for many fields, including Science Fiction, the National Space Advisory Council and various computer publications. I have been following his writing for about thirty years, and over the last year Jerry has been blogging about his experiences with a Brain Tumor and hnis treatment at SoCal Kaiser facilities. Many great observations and insights into the whole process of cancer diagnosis, treatment, and recovery. Who would have thought that his experiences would be helping me now?! Anyway, his blog is at www.jerrypournelle.com and is titled Chaos Manor In Perspective. The rason a walk reminds me of him is that one of his tricks for fighting the steroid manis is taking a walk--as long as you can--before you go to bed. I find it is working. The meds just give me nightmares and I wake up in a cold sweat.

Be well. Back soon.

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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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