A Preliminary Reading

Well, today was the Nuclear Bone Scan. For those not used to the terminology, that basically means that I was injected with a material that binds to the active cells in the bones and emits particles that a fancy geiger counter can "see".

Granted, that is a horribly simplified explanation, but it works. The "camera" simply sees radioactive decay particles and plots them. Over time, you end up with an outline of the bones and some other areas. The brighter the area, the more decay particles. The brighter the area, the higher the probability of cells that are running at a fast metabolic rate. Again, a simplification, but it works.

So, on to my reading of the scan. First off, the only reason that I can guess at this is having a bit of the theory, and a bit of experience in seeing these scans--the fruits of many years working in the Emergency Department.

From what I saw, the left Femur (thigh) lesion is confirmed; whether cancer or a bunch of cells fixing a fracture I cannot say. The Kidneys are definitely a hot spot with some funky dark spots on the left. A good friend tells me that the dark areas probably mean that there are dead areas in the left kidney. The other interestingly bright area is in the region of the bladder; not surprising as the nucleotide is cleared by the kidneys and at the end of the test I was desperate to pee ;)

So, all in all, not too bad a scan--as far as I can tell. I'll get back when I see the real reading. Moving forward I am looking at going to the Orthopaedic Oncologist for the femur lesion; and then off to the Urologist for the left kidney removal. With luck this will all happen by the end of January, but I am not looking forward to having a titanium rod shoved into my thigh. Ah well, what is, will be.

On the chemo front the side effects are not too bad this time. The GI stuff is a bit of a bother, but seems better today.

Not too much on the home front; we are looking forward to tramping thru the forest this weekend and picking out a Christmas tree. With a bit of luck we will even manage to get it decorated this weekend. Speaking of that, what in the world do they tell kids now a days? My daughter is deathly afraid that a "real" tree will catch on fire, and that says that we have to get a "fake" tree. Ah, don't get me started. They can't sing Silent Night at their Winter Festival, but they can sing O Hannukah. Yet another symptom that the Judeo-Christian origins of the US are being sundered, and the States are dead. All hail the Politically Correct interpretation of (dis) reality!

Anyway, enough depressing stuff. Today was a good day. I am alive, the family is alive, and we are all healthy.

Two quick notes. For those who have been reading this blog, I have good news and bad news about some of the people that I have mentioned.

Last week my Aunt Noelle passed from this earth. She fought a long and valiant fight against some disease that they still cannot diagnose. She was a wonderful person and has enriched the lives of all of us that knew her. Noelle, I will miss you. Say hello to momma for me.

As for my office mate, he is doing well, and evidently living without a kidney is not too bad. According to all of the work-ups he has no metastases and should be fine. Let this be so.

Please pray for them both during this holiday season.

Be well, and remember that it is the little things that count. Read more!

Thanksgiving Update

First, let me be the first to wish you all a Happy Thanksgiving. Many of us get so wrapped up in our lives, and the sheer commercialism of this time of year, that I think it is wise that we all sit back and reflect on the true meaning of this Holiday.

And what is Thanksgiving about? For me it is a time to remember all the blessings and benefits that we all have in our lives. A time to share those thanks, and whatever else I can, with family and friends. Some of us have more, some of us have less, but we all have something to share and to be thankful for. For myself, I am mainly just thankful for the fact that I am alive and relatively healthy, and that I am blessed with one of the best family's around. Both blood and "adopted". I truly could not be going through this so easily without the support of all. Thank you.

Now, on to the update stuff. Today I went to see the Onc, and to get another infusion of the "Bone Juice". My doc--and the whole team--are quite happy with my current situation. The current plan is to resume the chemo on next Tuesday, and after the cycle is over to run a complete battery of tests. So sometime in early January I will have another set of Brain and Spine MRI's, as well as the neck to nuts CT. After the tests are done I will be off to RWC and Stanford for my follow up appointments for the Craniotomy and CyberKnife. Also, after the tests I will be scheduled for the removal of my primary tumor. Yep, time for the Radical Nephrectomy (Kidney removal)! Seems kinda odd to be excited about another surgery, but I like the idea of treatment progressing. The only drawback is that I will have to be off work again for a few weeks. Ah well, I don't know anyone who died of boredom; so I doubt that I will.

Hopefully the next few days will not be as rough as after the last bone juice infusion; but what will be, will be. The Onc team all had some ideas to try out, so I am hopefully applying their suggestions.

Turkey day should be pretty quiet; we have some friends and my brother bringing food and spending the day with us, so that will be a big help. Of course, stubborn cuss that I am, I insisted on cooking the turkey, stuffing, and gravy. So, come hell or high water, that is what I will do. Besides, I did most of it today. All that is left is plopping the bird on the barbeque or into the oven...

Last of all, I have a special request. A good friend of mine--he stood with me when few would--recently underwent surgery and the pathology report came back this week. Turns out the two of us have another thing in common; we both have Renal Cell Carcinoma. His prognosis is rather better than mine--thank God they found it relatively early. Anyway, I am sure that he and his wife and kids would benefit from your prayers as much as me and mine have, so please remember him.

Thanks again to all of you; and remember that Thanksgiving is about sharing your bounty and being thankful for what you have. Sometimes a hard thing to do, and this year has been harder than most, but I am positive that we all have at least one thing to be thankful for. For myself, many more that one.

Be well. Read more!

Catching Up With Reality

OK, I have to send out an apology to a bunch of people. Evidently some people worry about me, and when I don't post here they email my family to find out what is going on...

Sorry all. I let myself get so caught up in returning to work that I forgot about everything else.

Things are going pretty well with this cycle of the Sutent. Amazingly enough, it seems that Benadryl is quite effective at staving off the side effects. Since day one of this cycle I have been taking 50mg of benadryl in the morning and at nighht. For me this dosage causes no problems, but it has sure kept the side effects down.

I am currently ending week four of this Sutent cycle, and I only just experienced the metallic taste side effect on monday. As for the funky oral swellings, they have not arisen this time around. All in all, this has been a good cycle.

Let's see, catching up on the rest of things...you have no idea how good it feels to be working. Of course, it probably helps that people seem downright ecstatic to see me, but the personal satisfaction of doing something to earn a buck really helps the old self esteem.

I finally finished all the dental work and started the pamidronate infusions. Boy, do those make you feel like crap. I basically get to write off 2 or 3 days after every infusion. Luckily they are every 4 weeks, so it is not too bad. As long as it keeps me from having pathologic fractures it will be worth it...

***WARNING: POLITICS SPOILER***
The craziness of this state's and country's electorate never ceases to amaze me. Millions of people get caught up in a movement to effect "change". So they all march like lemmings to the sea (in this case the promised land--as interpreted by Obama and Soros), They vote that chickens deserve what are basically an extension of HUMAN rights to the animal kingdom (what ever happened to being fruitful, multiplying and having dominion?); while at the same time they reject a similar dubious extension of "human rights" to fellow humans. Go figure.

Well, the majority of the public has spoken, and they deserve what they will get. As for the rest of us, BOHICA.

As one of my favorite authors says, "Despair is a sin. And bad tactics".
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Cyberknife and More...

TV commercials suck. The last thing that I want to watch is the latest Viagra or Tampax ad, especially when the kids are watching TV with me. Ever try to answer a six year old when they ask "Daddy, what's a tampon?"!

Since I hate commercials I tend to watch many of the shows from the DVR recording; that way I can tap the button I programmed for a 30 second skip and just bounce past the offensive interludes. Why bring this up? Well, last week I saw--for the first time that I can remember--one of the KP Thrive commercials and it really hit home. The scene is set by a young lady going about town, talking about how she has cancer. The tag line for the ad is "I have cancer, it does not have me." Great attitude, and one that I will have to remember.

Friday was Cyberknife treatment one; they did the spine only. Yesterday was treatment two (spine and brain), and today is treatment three (spine and brain again). Robin tells me that the CK team says I am their most relaxed patient yet...huh, all I do is try to sleep through it! What else is there to do when you have to hold perfectly still for one hour and are strapped into a cradle or mask to ensure compliance? Watch a fancy welding robot move about and spit Xrays at you? Boring. (Yesterday the CK tech discovered my secret--she came in at the end of the brain frying and had to wake me up.)

Side effects from the CK treatments are pretty manageable. Mostly just fatigue/lassitude and a touch of nausea. These generally hit around one hour after the treatment. Yesterday I was feeling pretty good and a bit adventurous, so we stopped and got dome food on the way home. Note to self: Fried McDonalds food and CK treatments do not mix well. I ended up missing dinner (a gorgeous steak) and spent the evening praying for my stomach to chill out. Joy.

Initially the CK scheduler had the majority of my treatments scheduled for the mid afternoon--which caused much whining from me due to travel and rush hour--but they have so far managed to reschedule every one to earlier in the day. Today's appointment is now in its third iteration, as we have to be there by 1130am. Just goes to show, whining can help! Plays havoc with Robin's scheduling back-up for her clinic though. I must say, her boss and the staffers have been absolutely stellar through this whole thing. Thanks ladies!

Not much from the Sutent this time around. The reflux can still be pretty bad--that and the steroids they are giving me as part of the CK treatment are why I am up so early--but not much else thus far.

Had a friend drop by for the afternoon on Sunday, so we spent the time kibitzing about our old employer and generally catching up. Great fun and a good morale booster. Hey, in case any of you forgot, it's the little things that help. I am also told that the prayer circle has grown again; thanks Mary and Laura!

Well, time to go. About time to wake up the house and do the Daddy thing.

Take care. Read more!

Sleepless in Castro Valley

Just a quick update while I wrestle with insomnia...I received a phone call from the Cyberknife folks late yesterday afternoon--tip for others out there: trying to locate items in a newly remodelled Safeway while noting appointments and talking on the phone does not work. I must have cruised the same aisles three or four times while trying to do both. I guess my sister in law is right, that Y chromosome prevents multi-tasking!

It seems that I have an 0800 appointment this morning (nothing like a timely warning) for the simulation and target scanning; then treatment appointments for Monday and Tuesday. Of course, the follow up email from the Treatment Coordinator has to confuse all of that, as it also mentions a treatment appointment on Friday. Not very confidence building. Ah well, all I know is that Robin and I will be at the Cancer Center at 0800 to sign in and start the day. The Treatment Coordinator tells me that today's appointments will last about 4 hours, so I think I'll bring my netbook along and surf. Yes, Stanford has free WiFi for the public to use.

Other news from the trenches: The various docs have finally agreed, and I am back on the Sutent as of yesterday morning. Too early to tell what the side effects will be this time around, other than nasty indigestion at 0330 in the morning.

Well, time to see if the Zantac is working and try to get back to bed. But first I'll have a bit of a snack as I am not supposed to eat anything after 0400 today (part of the preparation for the morning CT and MRI scans). Gotta keep the weight up...

Take care. Read more!

Back From Fort Bragg

Well, we got back from Fort Bragg last night. I guess we all had fun, because we slept thru the alarm and didn't wake up until 0715 this morning. Even our son--who is usually up and raring to go by 0600--was fast asleep when I went in to wake him! All in all quite a nice weekend. My brother and his family just happened to be there as well (no planning, just luck), so the kids got to play and bop around together.

Late Friday I got a call from my primary Onc--he and the Neuro Onc doc are worried about me taking chemo while the Cyberknife treatment is underway. Usually with normal radiation therapy there is a two week wait between the rads and the chemo. So now we are waiting for the Cyberknife docs to chime in as I told my Onc that the Stanford docs were not worried. Of course, the call was at about 5pm, so no chemo over the weekend, and still no answer yet today.

Well, not much else to talk about today. I have KP and Laundry duty so I probably ought to get back to it.

Take care.
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A Day at Stanford and Mailing List Update/Information

Robin and I spent the day at Stanford Hospital yesterday for the CyberKnife consult. The Neuro folks had billed this as a treatment appointment, but evidently SUH had other plans... As is par for a teaching hospital we had to wade through a group of Fellows and R3's before we saw the physician of record for the consultation. The treatment plan that we agreed to is for a return visit for creation of the face mask (assists in beam targeting) followed by final/targeting imaging by CT and MRI. Then we would go home for a day and return on day three for the actual therapy. The final number of treatment visits is yet to be determined, but it will probably not be more that three visits.

I heard from RWC late last Friday about the full spine MRI results: the only lesion noted is at L1, and it is larger than on the first MRI. There is some extension now into the surrounding soft tissue, and RWC thinks that traditional radiation might be beneficial--I am not convinced of this. I would prefer the CyberKnife team look at the scans and determine if they can address the lesion; so I have pushed the RWC team to refer the lesion to SUH, rather than telling me that they (RWC) think it is too large for the CyberKnife.

On other fronts, I have received a few mailing list requests from people who are already enrolled in the Google Group. Note: The mailing list and the Google Group are one and the same. I am only using the group for the mailing list features which offer more flexibility than the Blogger web site. Long story short, if you are receiving blog post updates then you are on the list and do not need to resubmit your name. If you are not recieving update emails and are on the mailing list then you should just leave a comment in the blog and I will try to figure out what is happening.

Well, time to get moving and accomplish things. Today is our Wedding Anniversary and I need to start acting like it!

Take care and be well. Read more!

Just a Tiny Little Pin-Prick

I saw the Neurosurgeon today for my follow-up.  Nothing earth shattering there, the wound is basically healed, and the remaining visual changes should resolve over the next month.  He did mention in passing a new mets that was seen on the post-op MRI of the brain on 9/25.  Evidently it is in the Temporal Lobe and about 0.5cm across.  This one will be left for the CyberKnife folks to deal with on Monday at Stanford.  Nothing like letting me know in a timely manner...  I wonder if that mets might be the cause of the Right Temporal Headache I had the other day?  The surgeon was pretty unimpressed...

He also mentioned that he has no idea where the hand cramps are coming from.  Why do all the docs say that?  Since I can so easily reproduce it by using chopsticks I'll chalk it up as a repetitive stress injury thing.

After the Neuro visit we raced over to Hayward to go see the general surgeon and have the barometer lesion removed.  All told they took out a chunk of my scalp about the size of the last joint in my thumb.  Call it 2.5cm x 1.5cm x 1cm.  If this is anything like the first excision it will end up hurting more than the craniotomy did, once the local anaesthetic wears off.  Now, where did I put those Percocet tabs?

Still waiting for the reading of the full spine MRI that was done on Tuesday--I guess I'll rattle the cages of a couple of people and see what shakes out.

Dad came down yesterday to bop around with us and keep me company during the appointments today.  He just jetted off because he has to be home by morning.  Sure is nice to have family around.

Time now to go get the kids from school.  Take care.

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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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Out of the Mouths of Babes...

I just tried to explain the concept of Vice-President to my six year old son. His take on the whole conversation and concept: "So, basically, she gets to be his side kick." Read more!

End of the First Round

It has been quite a day. I took the last dose of the first cycle of Sutent this morning. Now I get to look forward to the gradual decrease of the side effects and about 10 days being able to eat. I intend to gorge myself.

I had pretty much resigned myself to watching a boring Presidential race, with two teams of Senators--none of whom have any sort of Executive experience--trying to out do each other. Boy was I wrong! Saw the speech by Sarah Palin this am. She Rocks! I have a feeling that she will upset many apple carts before this is all over... At least now there will be someone who actually has done things, rather than telling others how to do things!

Did anyone catch the immediate response by the Obama crowd? “Today, John McCain put the former mayor of a town of 9,000 with zero foreign policy experience a heartbeat away from the presidency.” Last I looked, the only way she could be put a "heartbeat" away from the Presidency would be for McCain to be the President, not just a candidate. So, does that mean that the Obama campaign has conceeded defeat? Or, that they just can not write using proper english...

I also find it interesting that their first response makes it seem that towns of 9,000 do not count for anything. Last time I looked there were more small towns in america than large towns. Careful whom you insult Barack, your words may come back to bite you!

As for the foreign policy experience, let's see. So far we have 3 Senators--they get to vote on treaties, not make treaties. Their committees get to vote on appropriations, not decide the policies and priorities that determine the appropriation requests. Let's see, that primarily makes their experience that of saying "Yes" or "No" to other people's decisions on both foreign AND domestic policy. On the other hand, we have the Governor of the one state in the Union whose only land border is with a foreign country. One of only two states in the union that shares no borders with the "Lower 48". Seems to me that Sarah potentially has more experience dealing with foreign nations--especially on matters of trade and energy policy--than all three of the other candidates combined!

On to other news of the day. The mouth is much better today, no Benadryl since last noc and it is still getting better. The work gang sent me a "bouquet" of balloons congratulating me on completing the first round of the Sutent (THANKS Guys!). We are looking forward to going to Penn Valley this weekend for our nephew's birthday.

Enjoy the holiday.
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A Busy Week

Boy what a week! Last Tuesday was the first day of the first grade for the twins so Robin and I walked them to class and did the whole parent thing. Wednesday morning the kids informed me that I could drop them at the curb to school and they would walk the rest of the way...my, how fast they grow up!

The mouth blisters were entirely out of control by Monday, but now seem better. Funny story there; I took what I thought was "50mg" (2 capsules) of Benadryl late Modday to help me sleep. That it did not do, but within 1 hour my mouth felt light years better and all the blisters had reduced. So I started taking the Benadryl every 8 hours. Last night Robin asked me what I had done to make my mouth better, so I told her that I was taking a "couple' of Benadryl 3x a day, but that tomorrow I would be dropping to 25mg. Robin reminded my that we were out of the 25's and asked if she should go get some...well, after going back and forth about the size of the capsules she grabbed the bottle and made me put my glasses on. It turns out that what I thought was a bottle of 25mg Benadryl capsules was actually a bottle of 50mg caps. So, the end result is that now I am actually taking 50mg 3 times a day, rather than 100mg 3 times a day. Oh yeah, and I have also been told that if I grab any more meds without wearing my glasses I'm gonna get my ass kicked!

We saw the Onc yesterday and have arranged for a follow-up CT of the Chest/Abd/Pelvis for 9/10. He has also ordered an MRI of the Brain and lisinopril for my blood pressure as he is worried about the bad headache I had over the weekend and my BP of 170/110. The Onc is also a bit perturbed that now I want a second opinion after he started treatment, but his MA is putting the papers and disks together for us.

I have had a couple of bites on the request for the name of a Renal Onc specialist...the front runner is a Surgical Onc at UCSF. Thanks to all who wrote me with names and suggestions.

Had some calls and emails from friends this week, at least one every day. Boy, do they help. I'd be lost without the support of my family abd friends.

Last dose for this cycle is tomorrow am. I can't wait.

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Looking For A Second Opinion

After thinking about things, and doing a little research, Robin and I are convinced that we need to get a second opinion on the treatment, even if only to confirm the current one. So, if anybody out there knows of a good Oncologist in California with experience treating Renal Carcinoma, we would like to hear.

It has been a relatively nice week, with letters from friends and a nice time with my dad. He brought by a copy of a lecture on evolution and divine providence from UCB done by John Haught, it is supposed to be well done and quite entertaining. Something to watch next week while the kids are at school.

Side effects are still annoying, with the left lower wisdom tooth socket now swelling and painful since yesterday. But, now I know what it is filled with. It seems to be some form of blood blister. The labs for the week are mostly OK, but the platelets are down to the 120's. Kinda worrisome.

Week four of the chemo starts today. I am looking forward to the med vacation, if only to give my mouth a chance to heal and get a ton of food into me!
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A New Medical Slate PC?

Just to prove that I think about things other than cancer...look at this post I just saw over on Engadget. 20 bucks says that is a new medical tablet for hospital use. Read more!

A Good Night

I actually managed to eat all of my dinner tonight. Not up to my usual 2000 to 3000 calories, but getting there. I probably hit about 1200. And no Zantac today! Woohoo!

I also got a letter from another old friend. Today has turned into a good day.

Hey, like I keep saying, it's the little things.
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Need More Drugs?

Get cancer. They'll give you anything that you ask for. Seriously, every visit or phone call with any of my docs ends with them asking me if I need anything "for the pain". What pain? If I had any damn pain it probably would have started long ago and then there is a chance that we could have caught this early!

Anyway, the mouth is fine today--last night I could not even eat Shrimp Pho--and I had an email and phone chat with the Onc and his nurse. It seems that in cases where there are lytic bone lesions (translation: Bone Mets) a medicine called Aredia has proved useful in preventing fractures due to calcium loss. Now for the truly odd part. This medicine can, in rare cases, cause necrosis of the jaw (translation: your jaw rots). Oh joy. Needless to say, I will not be starting this medicine without being cleared by the dentist and having a dental cleaning first. That can't happen until around September 3rd during the medication vacation, as the Sutent can affect your bleeding times, and the oral mucosa changes definitely include increased bleeding with trauma. Heck, not even trauma--brushing my teeth hurts and makes me bleed like a stuck pig.

Had a nice email from an old friend today. It is the little things that help. I have spent the afternoon working on stuff around the house and with my son. Tuesday and Wednesday the kids go to day care, but today my son wanted to stay home so I picked him up as soon as the lab studies for Johns Hopkins were collected. With luck the genetics studies will be done in about six weeks.

A nice afternoon. Like I said, it is the little things that help.
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Weirdness Continues

OK, this is truly odd. Late Saturday the swelling on the right upper jaw went away; and the 49ers beat the Packers! Will wonders never cease?! The kids loved every second of the outing. Not sure if they paid much attention to the game, but the chance to play with their cousins made their night. I gotta say though, Damn! these football games have gotten expensive! Ah well, the family is definitely worth every penny, and then some.

Of course, my body is not content to leave thing as they are, so this afternoon my right upper jaw is swelling and painful in the area where the wisdom tooth should be. Ah well, at least I was able to get 2 good meals in before the swelling started up again. I'm not sure if the blasting I gave the area with the Water Pic yesterday helped or not, but I'll keep it up and see what happens tomorrow.

Not even sure if I'll call my doc about this one. By the time I can get an appointment it'll probably be resolved.
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Yet More Weirdness (continued)

Well, I'm done with the doc. He thinks that it might be Strep, so sent off a probe to the lab. We will also need to see what my routine labs show.

Played with the kids all afternoon. They are so excited about going to see the 49ers that they can barely contain themselves. Not sure if that is why it is so hard to keep up with them, or if it is just the chemo working it's magic.

The scalp lesion is still down, feels now like 50-75%. Time to gargle with lidocaine and try to choke down some food.
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Yet More Weirdness

Last night I went to bed with a sore throat. This morning my jaw--right where my left upper wisdom tooth would be--is swollen and exquisitely painful. To the point where I can't chew and can barely swallow. Time to go see the doctor. I can get that done when I go in for the lab draw today.
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My Head is a Dangerous Place

My low back has been killing me for the last couple of days. Now, most rational people with a history of spinal surgery would attribute the pain to their son running into their low back at full speed--Robin says it is the first time she ever saw me turn grey--but do I? No. It is mets. It can only be mets, and it is going to kill me right now.

Aargh! This is not fun.

OK, side effect check for the day: energy levels suck. Everything still tastes weird, mainly like cardboard or battery acid with a dollop of metal added for spice. Speaking of spice, hot foods hurt! Even the mildest of Jalapenos is beyond me right now. Eating is possible, but rarely enjoyable.

Got a couple of cards from the folks at work today. In all my years of passing cards for other people at work I never dreamed that I would be the recipient of some. Like I keep telling people when I thank them for cards and such, it is the little things that help. Thanks for the thoughts and prayers.
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Best Wishes

I received a couple of cards today and yesterday, two for Masses for the sick (it's a Catholic thing) and one get well card from a friend. It looks like folks on at least two continents are praying for my family and I. Thanks, we truly do appreciate it.

I have also had some emails over the last week from family and friends, and just want to acknowledge these as well. Thanks.

On Tuesday we finalize the Family Trust and meet with the Genetics Counsellor. We are going to rule out Von-Hippel Lindau disease.
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What to do? AKA, The Ethics of Treatment Selection

In my free time I have been looking at treatment options on the web and MedLine, as well as thinkingabout the morality of cancer treatment. Hey, I know that my head can be a dangerous place, but this thought just might have some relevance...

• Most of the treatments for advanced Renal CA only offer options for palliative care or a bit of life extension. It seems that the only definitive cure is to find the cancer early and remove it surgically. Once that is no longer possible the only options are various forms of chemotherapy.
• Only one therapy seems to offer any chance of a "cure", Interferon and Interlukin 2. Of course, IFN and IL2 has a partial response for 40% of patients and a complete response for 6-10% of patients.
• Currently the lesion on my head is down by 50% or more. Hard to tell as I can only feel the thing, but that is a pretty good response for the first week on the chemo.

OK, so here are the moral questions:

• Is remaining with the main stream chemo agents tantamount to suicide? After all, I would be choosing this knowing that there is no evidence of a curative effect, and doing so only because chemo has a higher response rate.
• Would choosing something like IFN and IL2--with it's low response rate, but a possibility of a cure--be the morally superior choice? At least here I would be trying something that can keep me alive for my family, but the choice could also hasten my demise if it fails.
  

Like I said earlier, my mind can be a dangerous place.

The headaches are resolving. Still no diarrhea (if anything, it is going the other way), but my mouth continues to hurt and taste like crap. Eating is not fun.
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Side Effects Begin

Well, the real side effects are beginning. Today I awoke and my mouth felt like crap. So much for hoping that lots of water would help with the oral mucosa changes. Everything tastes pretty nasty, kinda metallic and my mouth is very sensitive to anything acidic or spicy. The headache and the spacey feeling continue, but seem to be less today.

Robin is holding up well to all the stress, and I *think* I am as well. Leastways, nobody is calling me an asshole.

The kids are just fabulous, and completely oblivious. Nothing seems to intrude into their world of play, Kung Fu, and swim lessons...except for the occasional bath. I hope that we can keep them in the dark for as long as possible. The other day we decided that when we register them for the First grade we will request that they be in the same classroom. We had previously decided that this was the year to split them up, but now that seems like too much for them or us to handle. Everytime I look at them I am reminded of how little time I may have left with them, and just want to lose it. Yet everytime I look at them I am reminded of how much I have to live for, and decide that anything I am going through is trivial compared to what I owe them.

I have always loved my family, and vowed to do anything for them. It seems that I will have to simply just live. Something comforting in that thought, but I'll be damned if I can figure out why.
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Chemo Day 1

Well, last night went fairly well. Not too much weeping and wailing, and everyone got a chance to hear all the news first hand. No objections to our designations in the Trust, so that is good as well.

This morning I started the chemo. No major side effects yet, but the stuff does make me feel pretty spacey. Kinda like what Vicodin does to me--makes me feel like my head is stuffed with cotton, but doesn't stop pain worth a damn. According to the info I have the common things to watch for are diarrhea (of course...), hand/foot syndrome (basically sloughing), taste changes, headaches, oral sores and hypertension. Which reminds me, in nursing school the running joke during Pharmacology was that every medication in the hospital causes hypertension, seizures and death. So, let's look at the PDR. Yep, HTN, Seizures and Myocardial Infarction. I guess the old joke holds true.

I have been doing a bit of research on the Sutent. It seems to be somewhat effective at extending the time without progression, but it is not a cure. The only thing that seems to offer any hope of a cure is treatment with Interferron and Interlukin 2. And that is only effective in about 6-10% of cases. It is also only attempted after the primary tumor has been removed, so who knows if it will even apply for me...
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The Family Comes A'running

Well, everyone except my sister will be here this evening. Even my brother managed to re-arrange his flight back from New Zealand so that he will land in the Bay Area. Topics for discussion are arrangements for the worst outcomes. In other words, what to do if Francis dies. Robin and I have already figured a lot of that out, and will have the final of the Family Trust for them next week. In the mean time, we will be able to show them the draft.

The Onc called this morning, all of the labs were normal and the MRI showed no spinal cord impingement, so we will start the Sutent ASAP. I am going to pick up the meds this afternoon and start them in the morning.

Not sure what that means the prognosis is, but at least it is not "poor".
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Friends Helping Friends

A friend of ours at the hospital heard about the MRI need and managed to get us on the schedule for today, so the MRI is already done. Yeah! Now all we need is a reading so that the Onc can pick a treatment plan. Also had the LDH and other labs drawn while at the hospital.

I've had many MRI's of my spine over the years, but today's was the hardest. For some reason I basically lost it in the scanner. It just got into my head that the inside of the tube looked like a coffin, and that I was going to be buried alive and no one would notice it. Suddenly, I just had to leave, and I mean right now. My chest got tight, I couldn't breathe; it was awful This all hit about halfway through the test, and when the tech mentioned that we would soon be ready to inject and redo the scans I almost hauled my butt out of the tube then and there. I managed to hold it somewhat together for the next 10 minutes of the scan, and then the tech came on the intercom and said that the radiologist had decided not to do a contrast study. My god, I almost cried when they pulled me out of the tube.

I will never, ever, get into a MRI again without sedation. I can still close my eyes and feel the walls of the tube squeezing me out of existence...
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Meeting the Oncologist

Yesterday we met the Oncologist and talked about treatment plans and such. It turns out that I have:

• Renal Tumors, 9cm on the left and 2 of 1cm or less on the right.
• Mets to L1 in my spine.
• Mets to the skin (my scalp), including 1 lesion that I haven't mentioned until now. This one started as a zit.
• Mets to the Lungs--what I am calling shotgun effect, they all look like small #8 pellets on the CT and are scattered about.
• Mets to the abdominal nodes.
• Mets to the mediastinal nodes.
• Survival is about 22% at 5 years.
  

According to the Onc this is a Stage IV tumor. He is not sure what the prognosis is, but seems to me to feel it will be poor. I will need some more blood tests for him to make this determination. Oh joy.

He is advising that I will also need a MRI of my spine, as the mets to L1 could be life threatening (and the rest isn't?). Until the MRI is done he can't make a decision about what to start, but the leading options are chemotherapy for the kidney cancer or radiation for the spine mets. We also discovered that he likes and uses the guidelines from the National Comprehensive Cancer Network.

If we go for the chemo it will be 4weeks of Sutent followed by a 2 week vacation. After 2 runs he will rescan me and then decide what next. I argued a bit about that, and got him to promise that if the remaining scalp lesion shows any changes we could rescan after the first run of meds. He was rather noncommittal about surgery for the tumor in the left kidney, but I want the f'ing thing gone. I find it hard to believe that leaving it in place is a good thing.

After we got home I promptly lost it. So did Robin. Eventually we managed to hold it together long enough to pick-up the kids from day care. They will hopefully never need to know about any of this. I shudder to think what I would be doing without my family. I do love them so.

Oh, some good news. After we got home yesterday I threw out my cigarettes. I know, it may be a little late for that; but this will prove to be a battle of inches, and that is the first inch that I can claim as a victory.

Time to wait some more...
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The Next Nuking

OK, I had the CT of the Chest today. Again done with and without contrast. Boy, I am getting tired of needles, and here I've only been stuck three times in 10 days. What a weenie...

Again got a noncommittal response to my question about the CT. This time from a tech that my wife and I have known for years. That is definitely not good.

Yet more waiting begins. At least most of the diagnostic stuff (I think) is over.

Robin came to this appointment as well. God, I do love this woman.
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Some more answers

Saw the Urologist today. Seems that he has also had Kidney cancer many years ago. Go figure the odds of that.

Turns out that the cancer is not just in the kidneys. There is also metastasis to the bone--on the process of L1 in my spine--and possibly to my lungs. Time for another CT, this time of the chest. The Uro is unwilling to commit to any course of treatment; it seems that I will have to work through the Oncologist for that. He does promise that if I need surgery he can have me on the table the same day that I call him.

The Oncologist appointment that I made will have to be cancelled. The Uro has a different one that he wants me to see. Ah well, more waiting. At least I can work on the scan while I wait for an appointment.

At least Robin was with me to hear all the news. It makes it easier.

The boss is back on Monday, so today is the last real day that I have to cover the department. Didn't really work today, so I guess this is the first "official" day of my medical leave. We'll see how long it takes me to go stark, raving mad sitting at home. As I recall, after my back surgery 6 years ago it took about 2 weeks for me to lose it...
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The Hammer Falls

Got another of those infamous calls from the doctor today. This time it was suggested that I bring my wife. And come right away.

Turns out that the cancer is in my left and right kidneys. The tumor on the left side is about 9 cm. The tumors on the right side are both 1 cm or less. I will need to see the Urologist and the Oncologist ASAP. My Doctor has called them, and wants to know if I am free Friday. What can I say to that? "No, I have more important things that my life to deal with right now?"

Time for more waiting. At least I will also get the stitches from the scalp wounds on friday. Maybe I can pick the Surgeon's brain then.

My wife still does not seem to really "get it". Ah well, denial is a wonderful thing, and we all process things at our own pace.
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CT Scans and Evasions

Just got back from the CT. Full exam of the Abdomen and Pelvis, with and without contrast. Test went OK, but when I asked the tech if the "pretty pictures came out" all she would say was that the films didn't need to be repeated and would be read soon. All that without managing to look me in the eye. That can't be good.

Working while we go through all of this is really starting to get hard. I can't wait until my boss is back from vacation. Then I can drop the job and concentrate on this stuff.

Time to go pick-up the family at the airport. Read more!

Let the Waiting begin...

Took the wife and kids to the airport today for their flight back east. I am already wondering how I could have been so stupid as to let them go! So much for bravery and all that...

Telling my wife last night sucked. I don't think that it really sunk in for her.

The CT is at 4pm on Wednesday. Here's hoping. Read more!

Opening Post

Welcome to my blog, as the saying goes. I initially toyed with the idea of starting a blog for a few months, but have decided today to take the plunge after a friend suggested that it would be a good outlet for me.

You see, today at 3pm my doctor told me that the two wounds on my scalp that had to be excised and closed earlier this week are something called Clear Cell. Clear Cell is a type of cancer that is most commonly found in the Kidneys, and for it to be found on my scalp means that the cancer has already started to spread.

This is just too fucking strange. You bump your head, get an infection in the wound, go to the doctor, and realistically expect that they will fix things up. Instead I am now being told that I have cancer, and that I need a bunch of tests to see how far it has spread. So, now to wait for the radiology folks to call and schedule me for a CT. Tomorrow I also get to go in and get stuck for some labs.

(BTW, when in Med School do they tell Doctor's that calling a patient and telling them to come in "right away" is less traumatic than just telling them the news over the phone? They need to drop that part of the curriculum. The moment the Medical Assistant opened her mouth I knew that something was wrong, and hearing "the Doctor wants to talk to you" did NOT help things. The truth is always better than evasions.)

So much for my ideas about a blog that focused on alternative form factor PC's and electronic medical records in a hospital setting, I think I'll focus on Kidney cancer instead. Read more!