Just a Quick Thank-You

And a quicker update on things. First, I want to extend further thanks to a few people. Dad, thanks for always being there. You are more important to the family and I than I think you realize. To Shirley G, Jacqueline V, and Mary W; thanks for the thoughts, messages, prayer cards and just plain being around. I know that I often fail to answer; but I have read everything, and it gives Robin and I great comfort.

Now, on with the show...

I was subjected to my third thoracentesis today--you may recall that they are scheduled weekly now--and even more fluid was pulled off this time! Today's total was 2850ml, or just shy of 3 litres. Oddly enough, when the Radiologist looked at my chest with the ultrasound machine she thought that there was "only" about 500 to 800ml to remove. So much for the trained eye... Or, maybe I just have a bloody big pleural cavity. Thank God for the years on the swim team, it seems to have given me some respiratory reserve.

Anyway, I was feeling pretty good before the tap--no shortness of breath at rest, and very little with exertion--but I guess I can just compensate well. Or, as Robin puts it, I have an "amazingly effective game face". Whatever; I felt good before the tap. Now...things hurt like H E Double Toothpick! It feels like a whole drawer of knives and forks are stuck into my left chest and flank; and let's not even talk about coughing or hiccups!. For the first time ever I actually had to leave work early today because of the pain. Now, granted, I try to limit myself to only four hours on-site, but I have never before had to cut that short (truth be told, I usually stretch it out, much to the consternation of my wife and co-workers!).

Tomorrow is the weekly chemo infusion. Still getting very odd bouts of nausea from it, they come on in a flash and then watch out! Had a mildly humorous bout this weekend; at least I found it funny. My dog, on the other hand, was rather annoyed when I bent down to pet her and she caught a face full of it...Ah well, Sheba needed a bath anyway!

Not much else to report, still waiting for the SoCal doc to get back to us about the referral for the IFN/IL2 therapy. Robin started a support group today, she really enjoyed it and is thinking about cutting her work hours so that she can attend the weekly sessions. The kids are fab, and still have no idea what is up, only that Daddy has a "cold" these last few weeks. Ah, to be six again...

Be well. Read more!

A Bit of Good News

It has been awhile, and for that I apologize. What with Christmas and appointments and side effects I have basically ignored everything. But, there is good news.

First, let's review the Bone Scan results...nothing new there, except that what I thought was a fracture in my right foot way back when truly was. Yep, dropping a motorcycle on your foot will break the foot. The scan confirmed all of the existing mets and found nothing new. Damn good news.

In the intervening time I also had an MRI of the Brain and Spine--to check the results of the CyberKnife treatment--and all of the lesions have gone from small and dense to diffuse and larger. Before anyone freaks out, this is GOOD. As the lesions are treated and die they will result in some inflammation of the surrounding areas, and the tumor core will be "attenuated" on the scans. This has all happened; so things are good. The plan is to wait for another three months and see what happens.

As for the left thigh pain, that has been confirmed as a mets. I am currently undergoing full radiation therapy to the thigh for this, and should be done in about eight days. Seems to be working, as the stress related pain in my thigh is gone. Course, there is a downside, as my left leg feel decidedly weaker. Ah well.

That brings up an odd experience. The rad techs swore that I would noitice nothing, but yesterday when they blasted my leg every hair stood up like they were all charged...so much for them saying that "non-ionized" radiation has no ionizing effects. Of course, the techs think that I am nuts, but I know what I saw and felt.

Monday I have the Neck to Nuts CT; so we will see what the rest of my body is doing. Assuming that the scan shows a positive progression in the tumors, I will then have the Primary Tumor in my left kidney removed. Here's hoping.

As for the side effects; food sucks, but I am still keeping my weight stable.

If it were not for Robin and the kids I would probably have given up by now, but I cannot let myself do that. They are my life.

Happy New Year to all, and to all a good night.

Be well. Read more!

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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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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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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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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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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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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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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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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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!

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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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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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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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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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!