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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