"Beating the Odds"

It has been quite a bit since I last updated this blog; and my fault for not having done so. When we last left our intrepid explorer the most recent news was that SoCal had accepted the referral and would start the paperwork for actually seeing me. Since then, quite a bit has happened...

The days after my last post were rather frightful, with horribly increased trouble breathing and me pawing thru my meds looking for something to "fix" things. Bad plan. I should have just gone into the hospital. As it ended up, Monday the 23rd I had Robin take me in the the Emergency Department. A day in the ER getting tuned up, a few tests, and we had the answer to why I was having such difficulty. The left lung was completely "whited out" on the Xrays, signifying that it was basically full of fluid and not functioning. Game plan was agreed to by all that I would keep my appointment for early Tuesday with the Interventional Radiologist and go home for Monday night on enough meds to keep be calm and breathing.

Tuesday morning I awoke and a little voice whispered to me that this would be no appointment; better to pack my bags be ready for a stay in the hospital. Sure enough, the IR Doc took one look at me and said "consult over, I'm admitting you right now". Fast as that I was whisked off to admitting and then off to the Pre-Op unit to be prepped for a procedure that we had previously discussed. Within another hour I was whipped thru the IR Suite and the Chest Tube for the Pleurodesis was placed.

Time for a quick Anatomy lesson and explanation: there are two linings inside your chest, one covers the structures of each lung, and one lines the inside of your chest cavity. Normally these linings just slide across each other and help your lungs function efficiently. In my case the fluid being produced by the tumors in the left lung was leaking into this space between the linings,and squashing the lung out of the way--hence the white-out on the chest film. In Pleurodesis a Chest Tube (plastic catheter about the width of a pinky) is placed into this space, the fluid is drained, and then an irritating agent (talc in my case) is introduced. This irritant effectively causes the two linings to "glue" together, eliminating the space for the fluid to fill and restoring some lung function. OK, end of A&P lesson.

After the first tube was placed, the plan was to evacuate the fluid and "glue" the linings the next day. Of course, nobody informed my lung and it failed to cooperate. The IR tear performed a little wizardry, and back upstairs I went to wait for the next day. On day 3 the Chest Tube had mostly worked, but there was still one large effusion and a small one that were not cooperating. So, back to IR and this time they placed a second Chest Tube to try and get the remaining fluid. Another day, a bit more wizardry, and by Friday things were looking better so late Friday the talc was introduced to start things bonding. Sunday the IR doc came in (wonderful man--he was on a weekend trip and came home early to get to the hospital and check me out on Sunday) to the hospital and checked me out, said that the tubes could come out and I could go home if I felt up to it. Needless to say I was home in 2 hours.

Since then things have been a bit tough...I lost about 20 pounds over the hospital stay and afterward, my appetite vanished and everything tastes like crap. It has not been a fun couple of weeks, let me tell you! The ONC doc has been tweaking my meds, trying to find something that will help with the appetite, but nothing really worked. Also in there has been a return to the hospital as a outpatient, once for an infusion of fluids, and once for an infusion of 2 units of blood. Oh yeah, and I am also getting 4 skin lesions on my scalp irrradiated to burn them off.

The last week I have taken myself off of everything except the core "must have" meds, and lo and behold! My appetite is returning and I have put on 3 pounds in the last couple of days! Must be doing something right!

That pretty much brings us through the last month or so and up to today.

This morning Robin and I saw the Neuro ONC doc to review the latest brain and spine scans. The good news is that the treated lesions are all stable/shrinking. The bad news is that there are 5 or 6 new lesions in my brain that will need treatment. Because of the size (<5mm) and placements of the lesions the team feels that they are all candidates for CyberKnife, so back to Stanford we will go and then a return to the Neuro ONC in 3 months for follow up. He also wants be back on Chemo ASAP, especially since the one that my ONC wants to use has shown some activity against brain tumors.

//OOPS! Just hit the wrong button and published! Why do computers insist on doing exactly what they are told?//

OK, to finish up, the title of the post comes from something the Neuro ONC doc reminded me of this morning; no matter what is going on "you are still beating the odds for someone with Renal Cancer and Brain Tumors. Keep doing what you are doing, and stay strong"

Good advice.

Be well all, and Happy Spring! Read more!

Another Quick Update

Been quite a week, as I related earlier. The latest news is that SoCal has accepted the referral for the IFN/IL2 therapy.

Note, that does not mean that I will be getting the therapy, only that they will consider the request. Before I really hit the winnowing process there are some tests that have to be done. First, I have to have a Treadmill Stress Test. This is where they make you runn your butt off, and take a bunch of electrocardiograms while you do it, The aim is to see if you have any cardiac disease. My test will be a bit different, as the Orthopaedic Oncologist does not want me running--he wants to keep the stress on my left femur as low as possible, so I will have a pharmacologicic stress test..Currently scheduled for next Friday, so more to report then. I will also have to undergo a Pulmonary Function test--they will see how much air I can move and how well my lungs function--before the referral will be formally accepted. But hey, one step at a time. Assuming that I pass the tests, I will then have to travel to SoCal for the full consultation. One step at a time.

For now, things are going well. The chest pain gets better every day, and the nausea/vommitting from the weekly chemo infusions has not started up...yet.

Have a good weekend all, and Go Cardinals! Remember, it is the little things that matter to those around us.

Be well.. Read more!

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!

Catching Up

WWFD? Or, What Would Francis Do? Where the heck did that come from, you ask. Well, I gotta admit that this is from an old event, but corporate mail seems to take awhile...

Way back in September I attended a party that was in appreciation for the pivotal figures in our implementation of the computerized medical record. No, I was not a recipient, merely a participant, Any way, during the party I had a chance to talk with a group of the project's nursing reps, and they introduced me to the term "WWFD". Evidently it means "What Would Francis Do?" and it had become their standard approach to any problems that they faced. Needless to say I was 1)Humbled, 2)Honored, 3)Secretly proud, and 4)Irreverent.

The very next weekend my family and I were at the Castro Valley Street Fair and I stumbled across a stall that would create License Plate surrounds on the spot. Needless to say my irreverent side took over and just as a joke I had one created that had "KPHC" across the top and "WWFD" across the bottom.  Well, it turns out that this joke gift I mailed to the project is now posted on the wall of their clinical leader, and photos are floating all over the corporate intranet.  I guess it’s my 15 minutes…

So, on with the updates.  I had the Neck to Nuts CT a bit over three weeks ago.  All of the tumors are stable/shrinking—the ones in the right kidney are now classified as cysts—except for the lung tumors.  Evidently they are multiplying and growing.  The CT also showed a small pleural effusion (fluid pooling in the space between your lung and ribs) at the base of the left lung.  Needless to say my Onc was not happy--nor was I.

As a result of this finding I underwent a Thoracentesis (stick a needle through your chest, feed in a plastic tube, then suck out the fluid) 2 weeks ago.  The results were pretty normal, except for the presence of cancer cells.  On this tap they took out 175cc, not a whole lot.  Unfortunately, one week later I was very short of breath with exertion; so after a chest X-ray I was back in the Interventional Radiology lab where they took out 1700cc of fluid.  When she saw this, the only thing that Robin could say was “wow, ten times the last one”.  Thanks Robin.  Next Tuesday I am due back in IR to see how things are progressing.  As for how I feel, I haven’t felt this good in weeks.  As I used to tell my students, “Air goes in and out, blood goes round and round, oxygen is good”!.

The weirdest part of the experience came when I saw the tube from my back plugged into the vacuum bottle.  It struck me that after about 20 years of assisting on procedures like this—and feeling sorry for the poor bastard that we were treating—now I was the poor bastard being treated.  Very strange feeling.

As a result of the CT scan result and the effusion a bunch of stuff has changed.  First, my chemo has been changed to Temsirolimus; this is similar to Sutent, but is a weekly intravenous infusion which I receive every Wednesday morning.  Also, my Onc has referred my to the Riverside facility that administers the Interferron and Interleukin 2 therapy—with luck we will hear from them next week when their specialist returns to the US.  Pending the results of this referral, and the response of my effusion, the nephrectomy has been put on hold.

Looking back over the last few weeks, I am pretty chagrined to realize that I had no idea what was going on with my lungs.  Like I said earlier, I feel better now than I have in weeks, but a part of me is certain that I should have caught this earlier.  You have no idea what it is like to feel anxious with every breath, weak with every movement, and confused all the time.  And to think that I chalked it up to the side effects from the chemo!  Ah well, live a little, learn a little.

The side effects from the Temsirolimus are pretty limited; most of the effects are zero tolerance for spicy/sour foods and oral sores.  The biggest problem is the nausea and vomiting that hits on the second day after the infusion…yes, that is right now, and the porcelain god has received his due as I type this.  Bloody annoying; and tastes like crap to boot.  With luck it will end tomorrow, and I can get back to eating and drinking.

Well, that is about enough for one night.  Time to go huddle the throne and pray for the morning.

Be well.

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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.

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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.

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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!

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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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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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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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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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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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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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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