Bob's Cancer Blog

Can you hear me now?

noreply@blogger.com (Bob) — Thu, 24 Jul 2008 05:00:00 +0000

I want to thank all of you who have been following Bob's Cancer Blog as he waged his courageous battle with cancer. It is with great sadness that I have to tell you that Bob died early Sunday morning with his wife Nancy at his side at Swedish Hospital in Seattle in peace with God and man. This blog and those who read it received equal parts of pure Bob wit and insights. While sending this blog across the street or across the nation, he touched all of us with colorful stories of his ordeal. He was a beautiful man who showed us all how to live.

As a memorial to Bob, a scholarship has been established in his name at the SUNY College of Environmental Science and Forestry. Contributions to this scholarship will endow in perpetuity an award made to an undergraduate seeking a forestry degree. It is fitting to have Bob's name attached to helping young people who are following in his footsteps. In lieu of flowers or other gifts, the family requests that contributions be made to the ESF Foundation in the name of Bob Maimone. Checks should be mailed to: Mr. Robert Quinn, SUNY ESF, One Forestry Drive, 214 Bray Hall, Syracuse, NY, 13210.

I'm back...

noreply@blogger.com (Bob) — Tue, 01 Jul 2008 04:59:00 +0000

I'd like to say that my absence from blogging was because of something exciting - secret mission, exotic travel, whatever. But no, nothing interesting like that to report. But before I get to what I have been (or not been) doing, let me bring you up to date on how the Relay for Life turned out. Through your extraordinary generosity, the Kent WA area relay raised nearly $200,000, our combined church groups raised $20,500, and I finished up with $4500 (far more than I expected to raise). I ran into one of the American Cancer Society staffers that I usually see at the hospital - he was impressed how our little (OK - it's not that little, but it's still thought of that way in the rest of the county) city had done. The first picture is of me sitting on the track next to the luminaria
(taking a break already!). After dark the luminaria ringing the track are lit - each is dedicated to the honor or memory of a cancer patient. They stay lit all night, or until the candle dies down. The ceremony is quite touching - I cried like a baby halfway through it.

So - the question you've wondering about - where I have been for the past month? Well, to put it quite plainly, I've been sick as a dog. After the Relay, my health has taken turn for the worse. With no active treatment, my tumors have continued to grow and multiply. The fevers have continued, despite vigorous cowbell playing (see earlier post of May 7). The CT scan was not pretty and showed new tumors and expansion of the old and new tumors so that they completely filled my abdominal cavity, squeezing all of the other organs - much like my original condition two years ago at diagnosis (actually worse than what I started with). This makes breathing difficult, and causes extreme pain as the tumors press against my ribs. Sleeping is nearly impossible on many nights because I can't find a comfortable position. I can only eat small portions at any one time because there is not enough room to hold a normal serving. Pain relief is kind of hit or miss. Sometimes, over the counter pain medication works enough to dull the pain. Other times, I have to resort to prescription strength ("Do not operate heavy machinery") stuff which provides a few hours of relief - I can feel the pain, but it's at a manageable level. I can't use the prescription stuff very often because it upsets the extremely delicate balance I have in my lower intestinal tract. Since the last few inches of my rectum has a tumor residing in it, it doesn't behave like the normal smooth muscle there and help pass out waste. I have to take more polyethylene glycol (remember the stuff for the colonoscopy prep?) to help it work. When I take the prescription pain relief meds, they slow down all the rest of the smooth muscles and they all take the day off. Trying to get everything started up again reminds me of trying to start up a pulp mill after a maintenance shutdown - a complicated and highly choreographed process that that has to be done in a precise order and time schedule to work right.

All that being said, not every day has been miserable - there have been a few days where I have been functional and had a "good" day. But chronic pain and fatigue really take a lot out of your day. I have been attempting to continue to work, with mixed results. I have had to get a ride home before lunchtime on a few days, and some days, I just plain can't get up at all. On those days, I just sleep or attempt to catch up on the sleep deficit. Motivation to do much of anything else pretty much disappears other than trying to eat meals with my family and going to the bathroom for a continuation of poop watch. On nice days, I will sleep outside during the day. On most days, staying awake during the day is a struggle. Lots of things have gone undone or late, including replying (or even reading) email and keeping up with this blog. I apologize for waiting so long to update you all, but it has been tough. I probably could have found the time someplace to write a quick note - after all, I did find the time to take an out of town guest for a day trip up to Mt. Rainier, but the trip pretty well wore me out. Lunch at the lodge was nicer than the last time and we had a nice drive up and back. Still lots of snow too.

I also refused to miss our annual camping and clamming trip. I didn't think that I was up to sleeping on the ground, even with an inflatable bed, so I made reservations at the motel in town. As it turned out, we shortened it to just a day trip (normally a 3 day weekend trip) and didn't even spend the night. I kept my activities to sitting on a bucket on the tide flats and shucking oysters - nothing really physically challenging, but still able to sit with friends and chat. I had big plans to prepare Bananas Foster for desert, but ran out of energy really quickly after doing dinner - we'll save it for a later date. We sat and talked with our friends around the fire for a bit longer and then headed for home.

Well, I need to wrap this up - I'm running out of energy again and need to take a short nap before I try to knock off a few of the tasks on my to-do list. I'll try not to wait so long before writing again.

Poop watch - when will it end?

noreply@blogger.com (Bob) — Thu, 29 May 2008 05:31:00 +0000

As part of the fun that comes along with the colorectal cancer ride, it is occasionally necessary to gather more direct information about your tumor(s) besides imagery from CT and PET scans. A colonoscopy or flexible sigmoidoscopy (which only views the up to the first leg of the colon) provides a direct observation to a gastroenterologist and helps assess colon and rectal health. Not to repeat myself, but having a colonoscopy done at age 50, or earlier if there is any family history of colorectal cancer, is the best way to detect pre-cancerous or cancerous polyps or tumors and have them removed or treated early. In my case this week, a flexible sigmoidoscopy was in order to assess the condition of my primary tumor. I don't want to discourage anyone from getting colonoscopies or sigmoidoscopies, but I'll be honest - it is not really a fun procedure. Actually, the procedure itself is not that bad - it's the legendary preparation the day before that is so unpleasant. With the procedure scheduled for Tuesday, that meant that Monday (Memorial Day) was prep day. The diet for prep day was "clear liquids" - juice, jello, broth, tea. This just seemed wrong for Memorial Day - sorry, no cookout on the grill, no juicy burgers. Masochist that I am, I did actually smoke a pork shoulder to make some Carolina-style pulled pork barbecue for the family unit to eat. Why would I do such a thing? 1) Practice with a new recipe; 2) I like to cook; 3) I made plenty so that when the whole procedure was over, I could have as much as I wanted for my first solid meal. It was hard to drink the beef broth and pretend it was a liquid hamburger - sorry, it's a pretty poor substitute. After "dinner" is when the fun starts. Your next task is to mix up and consume 4 liters of a vile tasting (no flavor packet can completely mask the salty taste) solution of polyethylene glycol solution (PEG) at a rate of 8oz. every 10 minutes. Pretend it's a fraternity party - if only they made ale flavor, this mental imagery might work. (Note: PEG is also used to preserve green wood and wood salvaged from sunken ships and logs!) You already know what the result is from consuming the PEG, so I won't go any further with what happens next. My question is why is this stuff only available by prescription? Who would voluntarily buy this as an over-the-counter medication? And why did I have such a difficult time finding a pharmacy that had it in stock? After dropping my prescription off at the supermarket pharmacy (complete with comments about having a "fun weekend"), I was called back over the store's public address system to find out that they had none in stock. Next stop - Walgreens. Again, a sly comment about having a "fun" weekend when I dropped off the prescription, but they did have it in stock - but it was the last one. Am I missing something? Is there some sort of traditional Memorial Day cleansing ritual I don't know about (I really don't care to know about it if there is)?

The procedure itself was easy - the gastroenterologist was great, the nurses were great. I was given the option of staying awake or being sedated - one look at the coiled up camera reminds me that as interesting as this might be, perhaps it would be better to sleep through this one. But not to fear - the doctor made prints for me so that I could see what he saw. In the interest of decorum (not a word used often here), I am not posting the pictures. If you have a burning desire to see my insides, ask and I'll send you the images. I do know what my enemy looks like now though - it's pretty ugly, red, and angry looking. I did enjoy my barbecue (Lexington-style for you Carolina barbecue scholars), although the gurgly stomach from the procedure did make it sound like I had an alien inside me (well, I do come to think of it). The gurgles come from being inflated with air during the procedure - I do have to wonder about the wisdom of inflating middle aged people, especially men, with air. Given enough time and the right diet, I think I could have done that job myself.

Is this too much information? Sorry - but it's not pretty. But it would be worse to not have this procedure available for early detection and screening. Yet many insurance companies won't pay for it if you are under age 50, unless there is compelling evidence in a request from a physician. Fortunately, legislation has been passed in a few states that allow easier access and insurance coverage for colonoscopies for those under the age of 50.

I got a new back last week. You may recall from earlier posts that I managed to injure my back. As part of my campaign to fix all the little broken things on my beat-up frame, I saw a specialist who gave me an epidural injection of steroids. I got a really nice view of the fluoroscopic image of the L4/L5 vertebrae that showed they were just slightly out of alignment (sorry, no images to share on this one). The steroids, including my favorite from chemotherapy - dexamethasone, would reduce the inflammation of the nerves and allow them some more room and not get pinched. Just another big needle, which didn't bother me until he hit the vertebrae with it - I may have bent his table. But the relief was nearly immediate. While the response was not expected for some time later, I noticed it before I left the office. I'm trying hard not to overdo it while it heals up.

Relay for Life Update!

Final Relay update before the big event - just a few days now before Relay day this Friday. I am excited about participating in the Survivor Lap at the beginning of the Relay - all the survivors wear the official purple "Survivor" shirt and it's kind of a moving sight to see the track filled with all those purple shirts. It's good to see that people do manage to survive this journey. Your generous contributions have brought my part of the campaign to nearly $4400 now and helped my team hold onto the number two fundraising team in this year's Relay. (Aside to the wags at work who said that I missed an easy joke with the "number two" reference - a little decorum please - that's twice I've used that word now.) To reach my page and make a last minute contribution on line, click here. Thank you so much for your support.

My daughter and I attended a demonstration on preparing trees for bonsai on Sunday at the Weyerhaeuser Bonsai Garden. An example of an beautiful older specimen is shown above. My daughter notices my luxuriant eyebrows (a chemo side-effect) during the demonstration and whispers "Dad - I need to prune your eyebrows", to which I reply, "Perhaps with wires, I can train them". The scissors won out of over the wires.

Poop watch

noreply@blogger.com (Bob) — Mon, 19 May 2008 03:57:00 +0000

When you have colorectal cancer, a substantial part of your world involves your rear end and everything that comes out of it. It's not any kind of weird Freudian fixation, but as the primary source of your cancer and the jumping off point for possible later metastases, it really is kind of important to observe everything - it could be a sign of tumor growth or activity. Changes in size, shape, color, presence of blood in the stool can all be signs of polyps or perhaps pre-cancerous or cancerous tissue growth that are easy to ignore. If you've never had colorectal cancer this kind of attention seems kind of strange, but once you've been diagnosed and know that these observations are important and should be shared with your oncologist, it's not so weird. It's not like we observe and then score or grade our work (8.....8.5.....8.....9....and a 6 from the Russian judge.....). It's just important to be able to make an accurate observation and also be subtle and quick if in a public restroom. These are things that you would never have thought about prior to your diagnosis, and someday you hope that you won't have to think about any further.

I find myself in kind of an unusual place these days. It's like someone has reset the clock back to June 2006, with maybe a few things changed in sequence. I have the same symptoms I did when I was first diagnosed back in 2006 - difficulty and pain in my rear, pains in my abdomen and chest - signs of growing tumors. In the coming weeks, I will enjoy a "cleansing" evening after drinking a gallon of polyethylene glycol, visits to the gastroenterologist and oncologist for scans, doubt and uncertainty about the diagnosis, and optimism that whatever form of treatment I end up will kill the tumors that they will find in my rectum and liver.

Optimism is a powerful thing, and while sometimes hard to maintain, is sometimes all you have to keep you going. At the risk of getting in trouble with another joke, the subject of optimism reminds me of an old joke. There are lots of versions of it, and I've found several citations that this joke was one of Ronald Reagan's favorites. Here goes: The parents of two sons are concerned about the behavior and attitudes of their boys. One son is depressingly and hopelessly pessimistic, the other unrealistically cheerful and optimistic. They consult a family counselor who suggests some drastic therapy to shock the boys to bring them back to a more realistic outlook in life. With Christmas approaching, the counselor suggests that they fill the room of the pessimistic boy with toys, and fill the room of the optimistic boy with horse manure. On Christmas morning, the parents hear the boys stirring, and get up to see how the therapy is working. They visit the pessimistic boy's room first and find him fretting with the toys - "They might break, and the batteries will run out...". Dismayed, they check in on the optimistic boy. They look in and find him up to his chin in manure wearing a grin a mile wide. They ask him what is going on and the boy cheerfully replies, "With all this poop in here, there must be a pony in here somewhere....!". There it is - a joke about optimism that actually ties in poop. I'll keep looking for the pony.

I decided that Friday was a good day to go look for the pony. Springtime this year has been a long time in coming and Friday was an unusually warm and sunny day - after months of cloudy and cool weather, it was too difficult to concentrate on work, and frankly, I needed some time to think. I used a little vacation time and took a drive up to Mt. Rainier. The lodge at Paradise has been closed for the past two years for renovations, and Friday was the grand re-opening. I managed to get there just in time for the first lunch served in the newly re-opened restaurant. Seating was limited, so I enjoyed the company of a group of retired Park Service employees over lunch and met with the current park superintendent. I stayed at the lodge long enough to tour the grand hall, see the dignitaries and look at the cakes, and then left for a quick walk in the snow before returning home. There is still a lot of snow, almost as much as the last time I was there a few months ago, and it's the middle of May!

Relay for Life Update!

Two weeks left to go before relay weekend. Your contributions have brought my part of the campaign to nearly $3800 and helped my team to be the number two fundraising team in this year's Relay. To reach my page to contribute on line, click here. Let's keep going!

Swamp cabbage in bloom in the snow-melt fed swamps. Looking up the Nisqually River into the head of the glacier.

More cowbell...!

noreply@blogger.com (Bob) — Wed, 07 May 2008 15:49:00 +0000

I'd like to report that the first few weeks with no treatment have been wonderful, but I really can't. I can say that my skin is starting to behave like normal again - no red face, no burning, no blistering/peeling, no more splitting fingers and heels - this part is good. But the problem is that I developed a fever that lasted an entire week - from last Monday until this past Monday - it would start out as a low grade fever in the afternoon, and spike to 102-103F within a few hours. It pretty much wiped my motivation to do much besides sleep. The fever is apparently linked somehow to my tumors either growing or dying or perhaps both. The title of this post is a reference to a skit that appeared on Saturday Night Live in April 2008 that spoofs the VH-1 series "Behind the Music". The skit purports to be the real recording episode of Blue Oyster Cult's hit "(Don't Fear) The Reaper" and the cowbell part in the song's introduction. The band's cowbell player (played as the fictional band member Gene Frenkle by Will Ferrel) beats the cowbell intensely, and the band protests. The producer (played in the skit by Christopher Walken) comes out of the booth and encourages them to keep the cowbell. They try the song again but stop after the cowbell overpowers the entire band. The producer comes out of the booth once more and encourages the band with this statement: "Guess what?! I got a fever, and the only prescription... is more cowbell!" . I have to give my daughter credit for this - while I was suffering through a fever spike last week, she came up to me and whispered in my ear "You need....more cowbell" - a priceless moment for me. Thankfully, the fever finally seems to have broken.

Also tied to the fever is your new phrase for the day: "referred pain". All the malevolent activity in my liver has manifested itself as severe pain in my right shoulder and neck down to my waist (this in addition to the already existing lower back pain from some still undetermined prior injury). The pain reliever of choice is the active ingredient in Alleve - naproxen sodium - it seemed to work, and is a staple in my box 'o drugs.

I remain optimistic that alternate treatment will be the magic bullet that moves me past this present state. As I said in my last post, I'm kind of creeped out knowing that the critters are growing as I write this. I don't expect that they'll burst from my chest like the baby aliens in the movie "Alien", but I know the signs now that I didn't know when I was first diagnosed.
Pains in the chest and back, trouble in the bathroom (I won't elaborate), etc - all were signs before that I attributed to other problems, but turned out to be symptoms that I didn't catch the first time around. I'm not seeing these problems yet, but I can't help but be mindful of every pain, every unusual bowel movement and wondering if this is happening all over again.

To those readers who are subscribers and have this blog sent to their email, I apologize for the unusual behavior. You recently received an old posting in your email about getting screened (Oct. 21, 2007 post) - I didn't send it, although it did seem timely. I'm not sure what happened, although it did occur while I was editing my last real posting to correct an error after it was published. Let's see what happens this week....

Relay for Life Update!
I don't know what to say - at this point, I am nearly $1700 over my original goal and nearly $2000 above what I raised last year. Our relay is May 30-31, so we still have a few weeks to go. Let's keep going! To reach my page to contribute on line, click here. If you'd like, my daughter is also walking - if you want to spread the donations out (it all goes to the same place - our friends at the American Cancer Society), you can reach her Relay page by clicking here.

Other than that Mrs. Lincoln, how did you enjoy the play?

noreply@blogger.com (Bob) — Sat, 26 Apr 2008 23:52:00 +0000

The title is from an old joke, and appears appropriate for this week's posting. I really had a hard time coming up with a title and had a few others as possibilities: Good news/bad news (because of a fairly humorous exchange between Robert Schimmel and his oncologist in "Cancer on $5 a Day"); The "New Normal"; Not the solution I was expecting....

So, where to begin with this. Let's start with the bone scan. I guess the good news is that the pain in my back is NOT a bone metastasis - nope, not cancer. The bad news is that it looks like I really did hurt my back, although we can't exactly tell when or what was the cause might have been precisely. Some overall mild degenerative in my mid-spine, but a marked abnormality on the end of vertebrae L4, possibly an endplate compression fracture. I'm not really sure what the hell that means, other than it makes my back sore if I stand or walk. Is the result of having that old woman run me over back in July? Did the razor clam incident last month finish it off? Who knows. I'll be contacting my regular physician on Monday to get a referral with someone who can get me a start on fixing it. I'll have her look at a few other things that aren't working quite right - I've got some time to get the body work taken care of here in the next few weeks.

Why do I have time for this? Well, I also had a CT scan done on Wednesday. Nothing special - just a normal quarterly scan - maybe it could also shed some light on the back pain as well. Well, it was almost normal, although I did give the technicians, who now recognize me as a "regular" there, something of a scare. On the second full body scan, one of the techs came out in a hurry and asked - "Have you had any other surgical work done on your left side that maybe you forgot to put on the form?". Nope. A check quick revealed that I had forgotten that I had taken off my reading glasses as I had laid down on the table, and left them at my side. See picture at left - glasses are pretty obvious. In the upper left, you can also see the speedy new "Power Port" which the techs accessed to put in the contrast solution. Another minor glitch happened here - since it is a power port, they can put the contrast solution in at a higher rate and pressure than a conventional intravenous infusion...except if there is a small kink in the tubing. After the iodine contrast solution is injected, a saline solution is used to flush the line. A kink in the line caused too much back pressure when the saline was introduced, causing the line to shoot off and cover my shoulder with saline. Ha, ha - radiology slapstick! OK, let's get on with the real pictures. I brought the CD back to the office and looked at the images, as usual. Didn't really see much that looked different - if anything, the critters there could be 1mm bigger, or a 1mm smaller - probably within measurement error from last time...or so I thought.

When I went in on Thursday for treatment, my labwork orders had a note "See Dr. Gold before labs." Either I was going to have to stay after and clean the erasers for irritating the nurses last time, or there was going to be a change in my tests. My serum potassium has been acting a little strange lately, so maybe it had something to do with that. Wrong. Way wrong. Those pictures from Wednesday's portrait sitting at the radiologists showed that I have new liver tumors, and my existing tumors have grown, including the primary tumor in my rectum. Ulp. I guess that explains the jump in the marker numbers. Another set of words went through my mind, and I can assure you that none of them is printable. So - no treatment today - actually no more treatment with these drugs at all. There is no sense in continuing to take drugs that are not killing or slowing down the tumors and only making me miserable. I was afraid that this would happen sooner or later, and I guess that it happened this late in the game is better than having it happen a year ago. This is all just an evolutionary race - we treat the cancer with drugs and hope that we can kill it before it adapts to the drug and tolerates it. When the cancer adapts, you throw another drug at it and start the race over and hope that you get it this time. Basically, we ran out of drugs before the cancer adapted to them.

Are we done then? Nah. I'm getting a few weeks off (at least four) from treatment to enjoy life and get all the drugs out of my system. I will enjoy this time and can't wait to get my body back.

We'll be evaluating alternatives, although it's a little unsettling to be doing so, knowing that my critters are still growing and I'm not doing anything to actively fight back.

Since I'm ending my present treatment, this means that Silent Bob has been officially retired. I didn't get to say goodbye to him, but just as well because our relationship really had become kind of a drag - I just dragged him around for a few days every two weeks and all he did was squeak every 90 seconds and then whine like a banshee when he was empty. I had to keep him dry and make sure his line into me wasn't kinked or knotted. It was sort of like having to care for an infant tied around your neck - OK, I didn't have to feed or change him, but he was still kind of a nuisance. I also don't have to go to the hospital, which I'll kind of miss. I like my nurses, and we had a two-week cycle that we all got used to, and I will miss my friends who are receiving treatment. I didn't really get to say goodbye to them on Thursday, but I will get the chance when I go in to get checked up and to get my port flushed out. I will bring them treats.

Relay for Life Update

Wow. Our official kickoff campaign starts on Sunday night, and I'm already over my goal of $2000 (now at $2220), thanks to your generosity. The change in my situation will cause a change in the talk that I'm giving for the kickoff event - I'm not exactly sure what I'm going to say yet, and I may end up winging like I did last time. I'll let you know how it goes. I've only gotten one response to the question in my last post regarding whether I should simply raise the bar a little higher, or keep the original goal and let you continue to contribute and see how far I get over the original goal. The response indicated I should keep the original goal. OK with me - I still want you to continue to contribute to my Relay (click for link to my website) even more than ever. If my present condition doesn't emphasize the need for funding cancer research, I don't know what does. Sure, drug companies pay for research, but they can't cover all the bases - research funding also needs to go to universities and medical centers and other non-profit institutions. I join other friends now who are in clinical trials - this could be our last shot, unless we can participate in other trials if our present trials don't pan out. So please, please keep your contributions coming in. Thank you again for your generosity so far. The Relay is at the end of May, so we have another month to go.

Happy, sad, angry

noreply@blogger.com (Bob) — Tue, 22 Apr 2008 05:30:00 +0000

The past week has been a mix of emotions - happy, sad, angry - the issue is cancer survival. The happy is pretty easy to deal with - there are plenty of people who manage to get through their cancer treatment and resume reasonably normal lives. I have friends who started treatment around the same time I did who have been given the good news and have started life again - this makes me happy. Someday, I hope to join them on the other side of that fence and be able to look back at a closed chapter.

But with the happy also comes sad - sadness for those who have fought the good fight, but ultimately lost. For me this has come closer and closer to home this year. Earlier in the year I experienced the first loss of a friend from our online cancer community, which hit me harder than I expected for someone that I emailed occasionally, but never spoke to or met in person. Now it has hit much closer with the loss last week of a friend who started treatment at the same time I did and was part of our church "cancer club" (motto: "We really don't want you as a member, but will do our best to help you once you're in."). In the end, it was a slow and emotionally trying time for her family that I can't imagine putting my family through. Her memorial service was last night, and I made it all of 15 seconds into the service before my eyes filled with tears, and had a pretty tough time not breaking down completely when her husband reminisced about her as images from her life were projected above him on the wall. I'm very sad about this and will likely be sad for some time. I'm also sad for friends for whom treatment started out optimistically, but have now seen progression (I have come to hate that word - "progression") of their cancer and are trying experimental treatment with the hope that the magic bullet will do the trick. I'm hoping I don't join their ranks and I'll admit that the last big jump in my marker numbers does have me a little rattled. I'll have results from my bone scan on Friday and a CT scan this coming Wednesday when I see my oncologist for my next treatment on Thursday.

And I'm angry, and I think I have a right to be angry, as does every cancer patient. As I prepare to give the opening talk at our Relay for Life kickoff on Sunday evening, I've been doing a little research so that I get my facts straight. Richard Nixon declared a "War on Cancer" in his 1971 State of the Union address and signed into law the National Cancer Act in December 1971. The National Cancer Act established additional funding for the National Cancer Institute (NCI) within the National Institute of Health. Whether this war has been successful in the intervening years is open to debate - incidence of cancer appears to have declined a few percent in recent years, perhaps some measure of success. But as a patient, I can't help but be more than ticked off - 500,000 Americans will die from cancer this year. Five Hundred Thousand people in a single year - no conventional war in our history has killed this number of Americans in a single year. Can this be regarded as a "success"? Why isn't a war that kills this many people front page news every day, with a list of casualties and media coverage of every battle won and lost? I will spare you any additional soapbox on how much we've spent on "conventional" war in the past five years, and note that funding for NCI has been cut every year since 2005 and is more than 1000 times smaller than funding the present "conventional" war. Ask me why I'm angry.

OK - angry time needs to be over - it's not healthy. Back to happy. Maybe more than happy - more like ecstatic over your generosity with my Relay for Life campaign. As I write this, I am at 84% of my goal of $2000 in the first 17 days of announcing this year's campaign. At this pace, I will make this goal by the time I make the presentation for our team's kickoff on Sunday night! This poses a pleasant dilemna for me - should I ease off when I reach the goal, should I keep plugging away and keep going and see how far I get beyond the original goal, or should I raise the goal and campaign furiously until the event on May 30-31? If I raise the goal, am I changing the rules in the middle of the game? Is that OK? Give me your feedback - haydnprong@yahoo.com; your comments are confidential (unless you specifically tell me - "Use my name" in your blog, I won't publish your name - you deserve privacy too). The link to my Relay for Life page: http://main.acsevents.org/site/TR/RelayForLife/RelayForLifeGreatWestDivision?px=3638111&pg=personal&fr_id=5800

And finally - the great Oyster hunt continues (see November 25, 2007 post: http://haydnprong.blogspot.com/2007/11/happy-thanksgiving.html ). My buddy Tim scored big yesterday and brought over a dozen nice specimens - three each of four different varieties. Scoring for this round: #1 - Totten Inlet Virginica; #2 - Kumamoto; #3 - tie Hama Hama (very briny) & Penn Cove Select. The #1 and 2 positions remain unchanged in the overall scoring for tastiness, and the hunt will continue until we sample everything that is reasonably available for sale locally or by our own digging. And people say that I'm easily amused - maybe so - sometimes a good oyster will do it for me. Thanks Tim!

No whine this week, but no cheese either....

noreply@blogger.com (Bob) — Sun, 13 Apr 2008 20:24:00 +0000

Something new for the blog - for those of you who subscribe to this and have it sent to your email address - if you double-click on the title of this posting in the email message, it will actually direct you to the blog page, which may be easier to read than what shows up in the email message (some mail programs lose some of the original formatting).

I just finished reading Robert Schimmel's "Cancer on $5 a day* - How Humor Got Me Through the Toughest Journey of My Life " (*chemo not included). I first mentioned it in my March 14 th posting about cancer books that have been recently released Schimmel is a Las Vegas comedian (and NOT family friendly, so be forewarned), who was diagnosed with Stage III Non-Hodgkins lymphoma in 2000, after being named Stand-Up Comic of the Year, having a successful HBO special, and a new Fox sitcom. All of that disappeared quickly as he refocused his life on getting well and in the process, doing what he does best - making people laugh. His initial meeting with his oncologist has this line after being informed he has Non-Hodgkins lymphoma - "Just my luck...I get the one not named after the guy." And so it goes on. His oncologist tells him that if he can continue with his sense of humor, it will go a long way towards successful treatment. And it does - he's not playing comedy clubs any more while undergoing a grueling treatment regimen, but the treatment center at the Mayo Clinic in Scottsdale AZ. He finds himself seated next to a sourpuss of a patient, and the nurse warns him that he might want to change seats - his neighbor has a terrible attitude, to which the neighbor agrees and warns him that he's wasting his time. This is like waving a red flag to Schimmel who makes it his mission to make this man laugh. It takes a few tries, but he eventually wears him down with a tasteless joke about someone in a cancer support group that finally has him exploding with laughter, much to the surprise and delight of the nurses. On Schimmel's next visit, this same grumpy patient has been transformed and has a long list of jokes to share with him and the nurses. There is also a priceless story about the visit from the wig salesman when he's in the hospital - there are apparently wigs for everything (hint - Google the word "merkin"). I enjoyed the book and took a few bits of advice from it - one in particular from his oncologist - "Embrace your cancer". It sounds hard, but denial simply won't work if you are trying to get through this. I've taken those words with a slightly different meaning - a variant of the "keep your friends close, but keep your enemies closer." It can't be much closer than inside of you, ya' know? It is still my intention to kill that enemy. I suspect that this book will have been an easier read than the Arlen Specter book which I'm tackling next, but I'll let you know after I get through it and offer my opinion.

The Hero of the Week has to be my neighbor Mark, who single-handedly (after I begged out) emptied the neighborhood of teenage girls this past week, took them to the beach to dig razor clams, and got skunked in the process. Between the five of them, only two teeny, tiny clams (I mean like less than 1/2" long) to show for the effort. The weather was pretty lousy on Sunday night, and not particularly pleasant on Monday morning when they went out to dig, but nonetheless, everyone really had a good time. Mark - I promise you that we will do this again, and we will bring home something to show for it.

My Relay for Life campaign started out with a bang, with the first pledge coming in just hours after I sent out the first posting about it last week. Please keep those pledges coming in - I'm at 16% of my goal of $2000 for this year. As I said before - I have kind of a selfish interest in cancer research - it may be what keeps me around a bit longer. While some research is conducted by the drug companies to get another cancer fighting drug on the market (at considerable profit, of course), important research is also be conducted at universities and other non-profit institutions. The American Cancer society funds research not only for cures, but also for prevention and early screening programs. Here's the link to my Relay web page (also posted with the widgets on the side of the blog page) where you can make an on-line contribution safely and easily with a credit card:
http://main.acsevents.org/site/TR/RelayForLife/RelayForLifeGreatWestDivision?px=3638111&pg=personal&fr_id=5800

Treatment this past Thursday, well...just didn't happen. For the first time now since beginning treatment, my white blood count wasn't high enough. It was a little low last time, and I guess that fighting the cold or whatever I had that was knocking me down. Two weeks with low counts was too risky, so no treatment. I got a shot of Neupogen, which causes the cells in the big bones to start working overtime to produce more white cells (and also make those big bones really sore too) and was sent home. Wow - I guess I should have studied harder or something to pass that blood test. So I went back to work, and then came back on Friday afternoon to try it again. The Neupogen worked like a charm (count up much higher, thank you), and I swear that the cold I've been fighting seems to have let up a bit. Bad news though - the pre-treatment Neupogen shot might have to become a regular thing, with someone around the house getting the official job of sticking me in the belly with a needle on the day before treatment. I either learn to do it myself, or start being nicer to my wife (whom I've seen handle sharp objects in the kitchen - blood is sometimes drawn - oops, my bad - she reads this). So treatment this week was off a day. Treatment Friday, deaccess Silent Bob on Sunday. Silent Bob kind of freaked out on the way to the hospital today - almost finished administering his final dose of bad stuff and he just went off howling and I couldn't turn him off - not easy while driving. So he just kept screaming (it's a real annoying tone) until I could get him into the treatment center. The best we could figure was that his batteries were low, and he was pissed. I took out the batteries and that took care of the problem. Numbers this week - up! Up a bunch from 15.4 to 29. Hard to say why, although we did back off the dosage of the Erbitux last time. As usual, the warning not to get too mental about the upswing, and a reassurance that he (Dr. Gold) has a few more tricks up his sleeve.

I go in for a bone scan on Friday - another sort of PET scan with the radioactive glucose. The reason - the nagging back pain that I have nearly constantly now. In the best of all worlds, it's a manifestation of that loud popping noise from my back on that last razor clamming trip. Although it didn't hurt afterward, and not really even for at least a week after that, it could be that, and maybe a good deep massage will help. In the more sinister of interpretations, it could also be another metastasis - on spine or hip bone (which would really, really stink). The scan will provide more information and we'll take it from there. So, a few more portraits to be done, and then a routine CT scan the following week before treatment, so we can see what else is going on.

A little laugh now, courtesy of my friend Angie. This is a You Tube video, entitle "The Colorectal Surgeon's Song": http://youtube.com/watch?v=_N0w2rORwSc. Enjoy.

Pictures this week are of a dog-toothed lily in my shade garden, one of the first tulips out, and a new lace-leafed japanese maple I recently added to my collection.

You want some cheese with that whine....?

noreply@blogger.com (Bob) — Mon, 07 Apr 2008 05:21:00 +0000

I'm pissed. Until now, I have been pretty lucky in that this damned disease hasn't completely limited me from doing many of the things that I've wanted to do. Sure, it's slowed me down a lot, but I've been able to still do a lot of things. In the last few weeks though, I've been ground to a halt and had to completely pass on a few things that I really wanted to do, but was just not physically able to handle. You will recall that in my last post (which was really on 3/22, despite what the Blogger folks have as the post date of 3/14), I had just hit the wall that week and had to pass on spending a Saturday out in the woods. It turned out that the weather was perfect for the day in the woods - a rarity for weather in the past few weeks.

I'm not sure that I really got a chance to fully recover before going back in for another round of treatment on the 27th and ended up getting slammed again. My fault for going ahead with the treatment - I was offered the option of skipping, but damned the torpedoes, we're going ahead anyway - I want to finish this, and any delay if even for two weeks, is just not going to happen if I have any say about it. A small concession - after 14 months of nearly uninterrupted treatment with Erbitux at the full dose, we cut it back a notch (which will presumably still be as effective, and save the insurance company enough for a new car every month!). But I still felt like hell on Saturday - I mean really like hell. And to make it just a teeny tiny bit worse, my brother bought us tickets to see Bruce Springsteen here in Seattle - showtime Saturday night. I missed the concert. I am pissed. Too sick to see the Boss. I'm disappointed too - those tickets were a gift and I was too sick to enjoy it. Apologies to my brother Bill for not being able to follow through.

I thought I was well enough to go to work on Monday after sleeping through Sunday. Maybe I was well enough for Monday, but not enough for Tuesday. I was remarkably productive for a few hours, but by lunchtime on Tuesday, I was toast again. I slept through Wednesday and Thursday at home - with real (but stupid) intentions of trying to come in to work for a few hours in the afternoons, but no actual physical ability to do so. I have never been so drained. I am sick and tired of being sick and tired.

I had hoped to be spending tonight with my neighbor and our daughters, camped out in my neighbor's new camper down at the ocean. The plan was to drive down to Ocean Shores this morning, set up the camper and relax. We'd get up and catch the low tide in the morning and make another run at the razor clams - a daddy/daughter weekend at the shore. Nope. Another pass. I'm still not physically up to it. I wore myself out this morning just getting all the gear together for the clamming party. I feel bad for leaving my neighbor in the lurch - he's got 4 teenaged girls to wrangle tonight and tomorrow. Repeat - I am sick and tired of being sick and tired.

OK. Enough whining. Pity party officially over. I can still say that for as much grief that treatment causes me, it's not all bad. I have friends there. I have friends - fellow patients that visited me on Thursday, even though they didn't have treatments scheduled. It was great to see the old Thursday crew in the waiting room, although I felt like I had been sent off to detention when I had to leave them to go start treatment. I'm so glad they came back to my chair and visited more before my premeds kicked in. I know that this must drive the nurses crazy when we "visit" - thanks for humoring us. And extra kudos again to nurse Jenny B. for recommending a pretty effective and simple treatment for my painful dry skin. Olive oil. It's a little weird to rub some extra virgin into your face, but it really works. If I didn't already have the Costco mother lode of olive oil already sitting in the garage, I might consider buying a small bottle of some extra light (and usually flavorless) oil so that I didn't smell like pizza.

I love that Friday morning phone call when my numbers drop - now down to 15.4. It means a lot to me to get that call from my oncologist. Uncle Phil - you're the top. And thanks to Alice for checking up on me and calling in the Ofloxacin - the eyes no longer look like a week of hard partying.

A quick little snippet of conversation a few weeks ago when I was doing the Mountaineers Navigation class. After helping set up the tables and chairs for the class, my face looked particularly red - a little extra to go along with the chemo rash. The man I was working with stopped and said to me - "You got too much sun this weekend didn't you - you ought to be more careful, or you'll get skin cancer...". If he only knew (and he didn't). I decided to just let it go - no sense in dropping the cancer bomb on him for his helpful advice. I suppose that I could have been as charitable for a guy at work last week who commented on my rash (he didn't know either), but I felt compelled to fill him in on what I thought everyone in the building already knew. I did apologize for dropping the C-bomb on him, but the good that came out of it was that he had been putting off a colonoscopy for a few years, and I made him change his mind right then and there. Score!

It is getting to be that time of year already. The 2008 Kent WA Relay for Life is May 30-31. You were all so generous last year, enough to convince me that you'll be willing to not only match last year's total of $1700, but to help me make it to $2000 this year. You can visit and donate at my Relay webpage at: http://main.acsevents.org/site/TR/RelayForLife/RelayForLifeGreatWestDivision?px=3638111&pg=personal&fr_id=5800 . I look forward to your support.

And finally, the weather. It's just plain screwy here right now. We have had in the past 2 weeks: rain (no surprise there), snow, thunder/lightning, sleet, marble-sized hail, and a few hours of sun. Some of this combination of weather has occurred all in the same 4 hour period, making us just a bit confused. And probably not as confused as this hummingbird feeding in my backyard, who is probably wondering what the heck is going on.

Now, where is the cheese that went with that whine.......

Hitting the wall...

noreply@blogger.com (Bob) — Fri, 14 Mar 2008 14:01:00 +0000

I hit the wall this week. Actually, lately I've been hitting the wall every day, usually late in the day. What do I mean "hitting the wall"? It's when I reach the point of total physical (and probably mental too) exhaustion and start shutting down. I can barely keep my eyes open (the fact that the skin around my eyes becomes dry and painful to even blink doesn't help) and just want to drop off into a deep sleep. Usually, I hit the wall late in the afternoon, and by the time I reach my vanpool, I'm truly ready to nap, which I do in the back seat, and wake up in time to drive home after being dropped off, and then if I'm lucky, maybe take a short nap before dinner. But I've been pushing myself pretty hard for the past few weeks - mostly because I've been feeling pretty good and have been getting out and doing a few things that seem like my PC (pre-cancer) life. I got to go razor clamming (even if I did get skunked), and have been serving as an assistant instructor with the Tacoma Mountaineer's latest Navigation class. I've particularly enjoyed getting back together with the Mountaineers folks - I've been an assistant instructor for this class before, but it's a little different this time - some friends who were in the Alpine Scrambles class that I was taking just before I was diagnosed are teaching it now. I don't think they expected me to volunteer to help this time around, and there was kind of an interesting little double-take when I showed up for class last week (I'm still sorting out some of the reactions). There may have been a little apprehension in talking about my cancer, and I hope that I was able to make them a bit more comfortable in seeing that I am living with cancer. And I hope that I didn't blow it today by not participating in the all-day field part of the class, which is conducted at the Carbon River section of Mount Rainier National Park. But more about that later.

I've been pushing myself, and I paid the price for it this week. I was so exhausted on Wednesday afternoon, that I could barely drag myself downstairs to my vanpool from my cubicle at work. I really hit the wall big time. I felt about as lousy as I've ever felt - everything ached, from my scalp to my toenails (I've described this once before as being tired all the way down to the cellular level - my poor mitochondria were just out of gas). We had dinner early and I went to bed and slept all the way through my alarm clock radio (which stays on for an hour) in the morning. I woke up at 10:00, had a quick breakfast and thought I'd head into work a little late, but made the mistake of laying down for a second, and woke up about 5 hours later. I'm glad that I can log into my office PC from home and do a little work from home so that I don't end up just dumping all my work on my coworkers to cover for me. I needed the rest. I probably should have worked from home on Friday too, but that stupid sense of duty and responsibility made me go in.

Lest you think that my stupid Y-chromosome completely runs my life and makes me continue to push myself too far, I did have to settle on an unhappy but smart choice for today. The field exercise for the Navigation class is really the best part of the course - you get to try your skills in the field with some reasonably challenging exercises. The fact that I'm actually pretty good at them is a point of personal pride for me, and I really enjoy showing other people how much satisfaction you can get from finding yourself in the woods with a map and compass. I was feeling a bit better on Friday, but spent a lot of time thinking about whether spending the day in woods today (which also meant getting up at 04:00 in order to get there by 07:00) was a smart thing to do. I really wanted to go, even if my participation was at a greatly reduced level, but the one or two good brain cells that I have left overuled the rest, and I decided to bag it and stay home. I hated to send that email to say that I couldn't go - I let them know that I had not been feeling well and that it probably wouldn't be a good idea for me to push it, lest I also become something of a liability if I got sick again out in the woods. Dammit. I feel like any ground that I made demonstrating that it really is possible to live with cancer by being in the classroom these past two weeks just got erased. But I'm still on the volunteer list, and I'll get it next time. And I'm going to get another shot at razor clamming - two final seasons for the spring have been announced for the second and fourth weeks of April. Revenge will be mine - I will outwit an organism that has a brain half the size of mine.

I spent the day kind of hanging around house today, attempting to take it just a bit slower. This was made a bit easier by the discovery that the starter in my truck seems to be broken, effectively keeping me grounded for the day. I foresee the guys at East Hill Tire being able to make a few more boat payments after they finish with me this coming week. Always proud to support the local economy. I did manage to cut the grass in the yard for the first time this year, and attempt to fight back the ever encroaching moss.

Everbody seems to be writing books about their experiences as cancer patients. Pennsylvania senator Arlen Specter has written a new book titled "Never Give In: Battling Cancer in the Senate". It details his latest battle with cancer in 2004-2005 - Hodgkins lymphoma (he has previously had two brain tumors - damn, this guy is really tough) while actively serving in the Senate. He appeared on The Daily Show with Jon Stewart" on March 19 to plug his book, and I'll have to say it was one of the better interviews I've seen. Specter shows an amazing sense of humor, and in the interview, he shows a picture of him, bald as a cue-ball from chemotherapy, shaking the President's hand. The discussion of that moment in the picture sticks in my mind, because he points out the President's body language in the picture in a way that many of us patients feel at least once. You sometimes get the sense that the person who's hand you're shaking is maintaining just a bit more distance - as if maybe you might be contagious, and maybe they'd rather be someplace else. In reality, we patients need to be kind of careful whose hands we shake - with compromised immune systems, we're more concerned that they might be contagious. It was a pretty good interview, and the folks at Comedy Central have the video clip that runs at a bit more than six minutes.

http://www.thedailyshow.com/video/index.jhtml?videoId=164522&title=arlen-specter

I heard an interesting story on NPR's Fresh Air that aired on March 12 - show host Teri Gross interviews comedian Robert Schimmel "Humor eases the toughest journey". Schimmel has a new book out describing his cancer journey "Cancer on 5 dollars a day (not including chemo) How Humor Got Me Through the Toughest Journey of My Life"". The interview is a little long at 38 minutes, 43 seconds -some parts are a little tough to listen to - his personal relationships are an absolute nightmare, but overall a good listen. Adobe Flashplayer will play the clip. I'm ordering the book from the big company named after an even bigger river, along with Specter's book, so I'l be able to offer reviews. I noticed that there are couple of "Cancer for Dummies" books out there too - I'm not sure what to think about that.

http://www.npr.org/templates/story/story.php?storyId=88109634

My friend Angie got great news last week - her oncologist says that she is officially in remission from her cancer. She got the news the last time I was in for treatment, so she and her husband came up to share their news. No more treatments - just checkups and scans for a while. I'm really happy for her, and I'd be lying if I told you that I wasn't just a little jealous. Sigh. Some day...

Tomorrow is Easter Sunday.

Here's hoping your chocolate bunnies are solid.

PS - numbers on last visit dropped by one to 17.

The news just keeps getting better...

noreply@blogger.com (Bob) — Mon, 10 Mar 2008 04:50:00 +0000

A kind of scary story in this week's news about a contaminant in heparin, which is used as a blood thinner - the contamination may be responsible for the deaths of 19 Americans from an anaphylactic shock reaction to the contaminant.

tp://www.npr.org/templates/story/story.php?storyId=87961819

Much of the supply of heparin originates in China, already known for other cases of contaminated food, drug, and sundry consumer products distributed around the world. Particularly troublesome is the implication that the contamination may be deliberate. This one hits a little too close to home for me - I receive heparin every time we access/deaccess my port. The port is routinely flushed out before we start an infusion session (my biweekly "basting") with two syringes of sterile saline, followed by a syringe of heparin to ensure that blood won't clot in the catheter; and we follow the same procedure when we end an infusion and disconnect Silent Bob, leaving the heparin in the port and catheter. So far, the contaminated product in the US appears to be in vials distributed by Baxter International - not the source I receive (which I think is from BectonDickinson in pre-filled syringes). I'll be watching this story carefully and will have some questions when I go in this week for treatment.

In other items in the news last week, actor Patrick Swayze was recently diagnosed with pancreatic cancer. He is receiving treatment at Stanford University's Cancer Center, described as "radical chemotherapy". While advanced cases of pancreatic cancer have a pretty gloomy survival rate, perhaps Swayze's treatment will be successful and can be replicated with other patients - again, kind of close to home for me, as I have a friend with pancreatic cancer.

I'm not sure why I'm still awake enough to write this tonight. I've been up since 4:45 this morning with no sleep (and with the change to Daylight Savings this morning too - ugh) so that we could head down to the coast to go razor clamming. And for the effort, not much in the way of a catch - our determined party of three managed a paltry 4 clams, and for the first time, I was completely skunked and got nothing. And not only did I get skunked, but I broke my clam "gun" and then completed the trifecta by doing something that made a horrible "popping" sound in my lower back while trying one last time to pull a clam out of the sand. Even with the habitual "lift with your legs and not the back" that I try to do when lifting, somehow that missed it's mark this morning and had me temporarily immobilized for a few minutes (and just a teeny bit scared that I was going to repeat my TIA episode from January). After resting for a few minutes, it seemed OK, and so far is only just a little sore. I'll see what happens tomorrow morning when I get up. I'd say that the clams won this round pretty decisively.

An update regarding last week's post about access to this blog to employees at Swedish Hospital. Kate Wakefield contacted me on Monday to indicate that access had been restored - some of the widgets on the right sidebar (these don't show up in the version that shows up in your email inbox, but are present on the home site) can't be displayed, but that's a minor detail. And a correction - Ms. Wakefield's title is Sr. Information Security Engineer. Thanks again, Kate.

March is Colorectal Cancer Awareness Month. For details on some of the activities planned to raise awareness, please see http://coveryourbutt.org/.

This week's pictures above are of Samish Bay, WA from the drive back from Bellingham WA on Friday, and below another sign of spring in the backyard.

Spring is coming

noreply@blogger.com (Bob) — Mon, 03 Mar 2008 01:09:00 +0000

A few apologies and thank you's are in order this week. Let's

start with apologies first - first to Jim, my volunteer enforcement ranger friend at Mt. Rainier National Park who pointed out that the sledding activity in the video clip in my last post appears to be taken in an area not designated for sledding. I don't intend to condone illegal behavior, so I won't publish any more incriminating video clips without running them past legal counsel. Do I really have to turn myself in along with a mug shot and fingerprints for your files? It seems a little excessive...

Second, a thank you and an apology. While listening to my favorite local jazz station last week, I heard an advertisement for a fundraising event at a local club. I got more information on line -the event was the second annual Make the Evening Matter fundraiser featuring vocalist Steve Tyrell to benefit the Entertainment Industry Foundation’s National Colorectal Cancer Research Alliance and the Seattle Cancer Care Alliance (SCCA is here in Seattle). It sounded like a fun evening at the Triple Door jazz club with great food from the Wild Ginger restaurant, fine wines, and auction items including a weekend in New York with a visit to CBS News to chat with Katie Couric, dinner at the 21 Club, and tickets to see the Late Night with David Letterman show. Sounds pretty good, eh? I emailed for more information, and got the cold slap of reality when I found out that it was a mere $250/person for the evening (it was a fundraiser, right?). Yikes - a bit rich for my budget, and also on Thursday night, which was treatment day. I emailed back and thanked them for the information, and indicated it was bit out of my budget, but as a current colorectal patient, I'd like to stay on their mailing list for future events. A few hours later, I got an amazing message back from them - they offered me a free ticket! Wow - I have to change my assertion that having cancer has damned few perks - this was an obvious perk. I regrettably declined their generous offer - treatment would run late on Thursday and the show would start just about the same time I was finishing. If I wasn't feeling well, I wouldn't enjoy the event - the Thai/Asian fusion food might be kind of pushing it on a possibly chancy tummy. I don't own anything that can be considered "cocktail attire" (the appropriate dress as specified in the evening's description), although it really would have been kind of cool to show up at the treatment center, dressed to the nines, and then zip off to the club for the show (gotta work on getting some "cocktail attire" for the next time this happens). And their offer was for one ticket and I simply couldn't ask them to extend their generosity for a second ticket. So I passed on the offer. And then it hit me - I had just done something that I hoped I would never do. I subtly played the cancer card without consciously intending to do so, and they offered me a ticket. Did I really need to mention that I was currently a patient? Why did I do it? Maybe it's that being a patient is so much a part of me that I don't realize how it creeps into everything, which bothers me a little. I didn't want the disease to define me, and I've let it happen. I offer a sincere thanks for the wonderful offer, as well as my apology to the folks at Make the Evening Matter for playing the cancer card - I will be more careful in the future. I hope the show went well and raised money for the cause.

And finally, a thank you to Kate Wakefield, who is the director of Security for Information Services (I hope I got the title right) at Swedish Hospital. My last two posts have ranted about Swedish blocking employee access at the hospital to this blog. I had a very nice conversation with Ms. Westfield on Friday and expressed my concern about blocking access to patient blogs. She has promised to contact the service that handles the screening of web addresses and restore access to this blog on Monday. If anyone at Swedish wishes to have access restored to other patient blogs that may be presently blocked, Ms. Westfield says to give her a call and she can remove the block. It was refreshing to be able to carry on a reasonable conversation and come to a mutually satisfying conclusion to the situation.

This week's treatment was pretty quiet. Our regular Thursday group is starting to thin out a bit so my usual friends weren't there. It was nice though to have Nina stop by for a short visit. Numbers are up again though, from 9.5 last time to 18 - up, down, up, down, up - OK, now it's time to go back down again and keep heading that way.

Pictures this week are signs of Spring starting to show in my backyard.

I wish it really was Hawaii

noreply@blogger.com (Bob) — Mon, 25 Feb 2008 05:46:00 +0000

While I've been feeling pretty good with this round of treatment, one thing that still happens is that it still makes my face pretty red. Some of the drugs I take do make my skin more sensitive to the sun, but in the picture to the left, I've got a couple of coats of SPF 50 sunblock on. It's not the sun that's giving me the rosy glow. It seemed that it came up in conversations with people (mostly strangers) almost every day last week... "Have you been someplace sunny for vacation?"..."Have you been to Hawaii?" (I wish!)...etc. Well, it's really not much of a vacation, and not one I can recommend. I don't know why I have trouble answering this simple question - I've been this way for over a year. Maybe I don't really want dump the real story on strangers. More than once, the consequence of coming clean on the red face has made people feel bad for bringing it up - of course, how could they possibly have known? I assure them that they needn't apologize, and I hope that my explanation allows them to be comfortable around me. I guess I could just say I got some sun when I was out snowshoeing...

Video clip - Sledding on Mt. Rainier

A quick clarification on the February 21 post regarding the blocking of this blog at the Swedish Cancer Institute. The IT department there is blocking access to this site only for people who are trying to view it from computers at Swedish - they are not blocking access anyplace else. Employees at Swedish can still access it from their home computers. Another end around is to subscribe and the post will get mailed to the email address of your choice (probably even through the Swedish firewall) - just type in your email address at the "Subscribe" button at the website (address is http://haydnprong.blogspot.com/ ).

I also forgot to note that the last set of marker numbers dropped back from the previous level of 14 down to 9.5. This was the first set of numbers after resuming treatment without Avastin. As usual, I will be curious to see what the numbers do this Thursday.

I feel good...

noreply@blogger.com (Bob) — Thu, 21 Feb 2008 05:55:00 +0000

...and that's a good thing. I had treatment last Thursday that for the most part, was pretty unremarkable considering that treatments in the last few weeks have seemed to have some calamity associated with them. The new port has healed up nicely and worked flawlessly. We tweaked the meds a little more so that the queasy stomach that I've been getting in the past few treatments has been fixed. The down side of the new meds is that it means that I get to take the same steroids that keep me wired for a day or two following treatment for an extra two days. My stomach was great, but four sleepless nights might get old over time - but for now, I'm happy for the contented tummy.

It was also nice to have visitors on Thursday - my friend Angela brought her two young sons up to visit - Angela is a fellow patient. I think that the best thing about their visit (besides their Valentines cards) is that one of her boys not only thought that their visit was OK, but that he decided that his bed time book would be "Curious George Goes to the Hospital" and that during their visit to the treatment center, "we didn't die" (his words). It sounds like kind of a strange thing to say at first, but when you're a little kid, the hospital can be a downright scary place - people die when they go to the hospital. I am so glad that I had some part in showing him that the hospital isn't so scary and that when we go there, we are getting treatment to make us get better when we're sick. The boys also got to visit the team of people who have been part of Angela's team - the Resource Center, Radiation Oncology, surgeon and oncologist. We also had a visit from our friends Bruce and Sally, who have been part of our "Thursday Treatment Club" for a while. Our "Thursday Club" schedules are all kind of out of synch with changes in our various treatment schedules so we don't always see each other now. They came to see us even though they didn't have to already be there for treatment, which I think is just wonderful.

Up until now, you have always read in my posts that I've been quite happy with the treatment that I've been getting at the Swedish Cancer Institute. I am still glad that I am getting treatment there, and think that my oncologist and nurses are the best in the world. But I have a beef now - it has nothing to do with my treatment. The folks who manage the information technology resources at Swedish have decided to block access to this blog from the computing system there. In doing so, they have limited the ability of the professionals who take care of me from keeping up with my progress between treatment visits. I realize that they have the right to decide how their computer and bandwidth resources are used in the workplace, but I think that this just seems petty. I'm guessing that other patient blog sites are also blocked when they show enough network traffic, so there are probably others who share my irritation with this censorship. For now, my friends at Swedish can still access this blog from the rest of the civilized world, but maybe the IT folks will come around and change their policy.

I really did feel pretty good with this last treatment round. I felt good enough to go out on a snowshoeing expedition on Tuesday. I haven't been out on my snowshoes since I was diagnosed, so I was a little apprehensive about my ability to be able to hike in the snow. We went up to the Paradise visitor's center on Mt. Rainier to enjoy the nearly 16 feet of snow that has fallen this season. I was a bit out of breath on the short uphill climbing, but it still felt pretty darned good to be out. It was a bright sunny day and warm enough to strip down to shirtsleeves.

It couldn't have been better.

Happy Valentine's Day

noreply@blogger.com (Bob) — Mon, 11 Feb 2008 00:59:00 +0000

A brief addendum to the last post - some of you asked "How big is that port thing anyway?". I should have included something in the picture of my old port that gave some sense of scale. See the photo to the right - it's about the size of a quarter in diameter and about a half inch tall. The new port is a little smaller in diameter, so it's a bit more of a challenge to hit it dead on with the needle.

In my January 14 post, I put in a plug for the Colon Club's clever calendar - the Colondar.
http://www.colonclub.com/colondar.html

The Colondar is kind of a tongue-in-cheek way of promoting colorectal cancer awareness and highlights people who have been diagnosed before the age of 50. I first saw the Colondar hanging in the lab where I have my blood work done before each chemotherapy treatment - I have one hanging in my office. This year's models are photographed in black and white, with blue highlights (blue is the color that symbolizes colorectal cancer, as pink is associated with breast cancer).

Mr. November, Ray Beckler (at right) - is my hero - he's 50 now and has survived four episodes of cancer, and he still looks pretty good.

I confess now that perhaps my plug may have been a bit self-serving, since I was a contestant to be in the 2009 Colondar. I found out this week that I didn't make it this time, but I'm shooting for inclusion in the 2010 edition. The Colondar folks requested prospective candidates to send in a biography and a photo showing what could end up in the Colondar (of course, they have a professional photographer do a real photo shoot).
The photo I submitted is intended to look like this year's models - my daughter shot the photo in our backyard, and believe me, January is not the best time to shoot an outdoor photo with no shirt. I had some help (for which I am extremely grateful) with the color highlighting. Here is the result: We probably shot this picture fifteen times - some were definitely not flattering, but we don't need to go into that now.

It took me a few days longer to recover from my last treatment. It was the first time with the new port, which worked fine, although it was a little sore since it only got installed two days earlier. Treatment itself was uneventful, and now thirty minutes shorter since we are no longer using the Avastin. We've taken Avastin permanently out of the lineup after the TIA episode a few weeks ago. Since Avastin affects initiation of blood vessel growth that would feed tumors, it may also be affecting blood vessels elsewhere in my body, like maybe in my brain. While we couldn't really see any damaged blood vessels in my head, we're not willing to take any more chances. I hate to take one more weapon out of the fight, and I guess we'll see what happens with my marker numbers this week. The number did go back up again last time, to 14, but we only administered the Erbitux in the previous treatment (we limited the treatment at the time since I didn't have a working port, and the peripheral IV in my arms doesn't work very well). It's time for the cavalry to come riding in with a new drug.

Thursday is treatment day again, and it's Valentine's Day. Have a Happy Valentine's Day.

Out with the old, in with the new

noreply@blogger.com (Bob) — Thu, 31 Jan 2008 05:09:00 +0000

In this case, the old port is out and the new port is in. I had surgery yesterday to remove the old port which was installed on July 3, 2006 and had become clogged. I had surgery earlier this month to remove a flap of tissue that had grown over the end of the catheter implanted in my superior vena cava (the biggest vein in the body that returns blood to the heart), but for some reason, it was clogged again two weeks ago and unusable. So, Dr. Feldman got another chance yesterday and removed the old port and replaced it with the snappy new titanium "power port" ("power" because it can handle fluids up to an astonishing 5 mLs/second and 300 pounds per square inch - WOW!). And Dr. Feldman, ably assisted by charming nurse Connie, in one of the coldest rooms I've ever been in, let me keep the old port (pictured above) so that I can turn it into an arty piece of jewelry. I was going to remove the silicone septum in the center (this is where the needle used to penetrate - you can still see the marks made by being poked 80 times) and have a stone mounted in its place, but I kind of like the silicone. Maybe a belt buckle or bolo tie?

And those of you who have thought ahead and wondered, "Don't those crazy people that Bob works with have some kind of weird voodoo doll that they fix up every time somebody in the group has surgery or goes to the hospital?". If you remember back a few months, it was my turn to get "Loafman" (see June 18, 2007 post), and he was given his own infusion pump and LiveStrong bracelet. So, of course, now it's my turn to have Loafman again, with a green silicone septum inserted into his shoulder, reflecting my new port installation.

And that pesky TIA (transient ischemic attack) two weeks ago? Inconclusive really, based on the CT scans done right after it happened, and on the MRI/MRAs done last Thursday. No metastases up there, and it wasn't a stroke. According to the radiologist's report everything looks pretty normal. Sigh...normal again. Not so much as a "Wow, this brain is incredible!" or even a "nice brain!". Just normal. Even though it's just normal to the medical professionals, I still think it's pretty special, and I love the images. Here are my favorites:

Always a silver lining....

noreply@blogger.com (Bob) — Fri, 18 Jan 2008 22:21:00 +0000

01/18/2008

...and in this case, the addendum to yesterday's excitement is that my marker number dropped back down to it's pre-holiday level to 7.4 (after jumping up to 22 after an extra week off over the holidays). More festoons and hoopla are in order.

Uncle Phil - I think my brain is OK, minus the bent gears in yesterday's posted picture. Thanks for the call this morning. You deserve a beer tonight.

Problem Child....continued....

noreply@blogger.com (Bob) — Fri, 18 Jan 2008 05:31:00 +0000

Remember that "cleanout" of my port two weeks ago? The surgeon fished a probe up from my groin, clipped away the flap of tissue covering the port's catheter, and we pronounced it good. Fast forward to this Thursday morning - I head to the lab prior to my biweekly basting to get my port accessed for blood work and for treatment. And nothing. No fluids in or out of my port - it's STILL CLOGGED! No wiggling, no twisting, no gyrations seem to make it work. So, helpful patient that I am, I brilliantly remember the "Valsalva maneuver" that has worked before. You hold your nose, purse your lips tightly and attempt to blow out for a few seconds. The resulting pressure in your chest temporarily blocks the blood vessels, and blood builds up. When you release the pressure, the blood rushes through the vessels, and the port is cleared. Except that it didn't work this time - and in a big way. I got really light-headed, and then lost all feeling and control of the left side of my body from my shoulder down to my waist. I couldn't control my left arm - it just flopped at my side limply and I couldn't figure out how to move it. Then it fell down next to me and dropped between the seat cushion and the frame of the chair. I attempted to lift but it jammed in the chair frame, but I couldn't feel it and involuntarily jerked it up and down a few times, making it look like I was having a seizure of some sort, which scared the nurse. She called for Dr. Gold - NOW! They freed my hand from the chair frame and made me squeeze Dr. Gold's hand with both my hands - the right one worked OK, but I couldn't squeeze with the left. Then it was "follow my finger with your eyes" "No, don't turn your head, follow me with your EYES" (duh). Eventually, I regained control of my arm and hand after about 20 minutes, but it kind of screwed up plans for the rest of the day. Up to Radiology for a CT scan - NOW, to see if I had a stroke (probably not, but let's check for sure), or if there was anything else amiss. Back down to the treatment center, and drumroll please.......The good news is that it wasn't another metastatic tumor (no, I'm really not shopping around for any more of them...really), which never even occurred to me as a possibility. And it wasn't a stroke, but it was sort of like a little one - it's called a Transient Ischemic Attack (TIA), which is a temporary, but reversible stroke. I apparently triggered it with my attempt to be helpful with the Valsalva maneuver. I'm going back to radiology next week for some more scans - MRI and MRA (magnetic resonance imaging and angiography) on my head, and CT scan of my abdomen to see what Heckyll and Jeckyll (my two big liver tumors) are up to. I can't wait to see the pictures.

And since the port is clogged up, I may get the chance to get that spiffy new titanium model installed anyway (insert audio clip of cash register ringing here). With no working port, it was back to another peripheral IV this week, but I didn't get the full nuclear option - only the Erbitux. The Avastin is out since it may make any possible vascular problems more problematic. Silent Bob also gets the next few days off as well.

So, now for this week's thank you's and apologies. Thanks to Kevin for getting the IV started with skill. Big thanks and special apologies to nurse Jennifer D. for acting quickly in making sure that I wasn't having a stroke and for wheeling me up to radiology - I feel badly for making your morning more exciting than necessary. And likewise to Dr. Gold - really, I'm not trying to be difficult - you're the boss. Just don't make me stay after and write on the blackboard "I will behave and not scare the nurses" one hundred times. And to all the nurses in the lab and treatment center - I really appreciate all that you do every time I visit.

I'll have to admit, I'm disappointed that this little complication has happened. I was pretty optimistic this morning when I went in - newly cleaned out port and all, and it just didn't turn out that way. Oh well... back to the old drawing board.

Happy Birthday!

noreply@blogger.com (Bob) — Tue, 15 Jan 2008 06:10:00 +0000

Bring on the festoons and hoopla. It's the first birthday of this blog! I posted the first update exactly a year ago today. And how much snappier and technologically advanced it is now compared to a year ago. You may recall that my first post was actually a clay tablet that I inscribed with a papyrus reed in cuneiform, but this was much too difficult transmit electronically - the clay was much too heavy for typical bandwiths and took forever to upload and download, and dial-up was damn near impossible. Now we have links to other sites, the embedded video clip (that kind of worked for most readers), and a subscription link. Now if I could only figure out how to add a soundtrack - I'm working on it.

Some readers wondered what all the fuss was about in my last post about my "port". The port is a stainless steel and silicone device that is implanted in my right shoulder, and gets "accessed" every time I receive chemotherapy. A needle is pushed through the skin over the port (it doesn't hurt as much as you might imagine, even though the needle is big enough to use for upholstery), and into a blob of silicone rubber that covers the steel disk. This disk has a catheter that is implanted into my superior vena cava, which is the large vein that returns blood to my heart. When I receive fluids intravenously through the port, it is reaches the heart in less than a second and then pumped throughout my body almost immediately.

The problem I had last week was that a small flap of tissue about the size of my thumbnail grew over the end of the catheter and clogged it so that no fluids could go in or out. If the flap were smaller, the injection of the "rattlesnake venom" (which is not really venom anymore - they use genetically engineered e. coli bacteria to make the stuff) would have have dissolved the tissue and cleared the catheter. But there was too much stuff to dissolve away, so the surgeon fished it out by entering the femoral vein in my thigh with a thin wire and cutting off the flap and pulling it back out. I'm still pretty amazed they can do stuff like that. Next time, I'll have him install an MP3 player (IPod or Zune?) under my arm and I'll have something to listen to when I have to sit in the big green chair during infusion time.

I go back for another round this Thursday, and I'll get a new set of marker numbers. I'm still feeling the effects of the last round I received a week and a half ago (the return of the "burning face"), so it must be doing something.

And finally, a plug for colorectal cancer awareness. The good folks at the Colon Club publish a clever calendar every year called the Colondar. It features colorectal cancer survivors and patients. Buy a Colondar today - who knows, maybe you'll see someone you know in it. You can find them at: http://www.colonclub.com/colondar.html

Problem child

noreply@blogger.com (Bob) — Mon, 07 Jan 2008 04:48:00 +0000

...yep, that's me. Back from vacation in North Carolina Wednesday night, and in for another round of treatment on Thursday morning. It should have been just another routine day of chemotherapy, but somehow things just went awry right from the start. Lately, it's been more difficult to use my port (where the needle goes in to administer the chemo), with some writhing and wriggling necessary on my part, or the use of the "rattlesnake venom" treatment to dissolve any tissue that may have blocked the end of the catheter (like we did last time). This time, no amount of gyration or rattlesnake venom could open up the clog (we tried the rattlesnake juice twice), so we had to get a lab sample from my arm, and then attempt to administer the chemo through an IV in my arm. I say "attempt" because it took three trys to successfully get an IV started. My skin has become so tough and leathery that getting a needle into it and not all the way through a blood vessel is pretty tough. Try #1 left a huge bruise, Try #2 produced a huge swollen knot, and Try#3 finally worked. This made for another long day, along with some bruised up arms to show for it.

Since my port was clogged, I had to go back to the hospital on Friday to have a "dye study" done to see where the clog was and if it could be removed. But before we could do the study, they needed a blood sample and had to start an IV again. Remember Thursday? Friday was a repeat of Thursday, and it took three tries to get one to work (thanks to their IV specialist who finally hit the winning vein). The picture above doesn't show all the holes poked in me, but I'm sure that a big drink of water would have had me looking like a lawn sprinkler. A note to Rick D. who is one of my friends and is presently studying to work in an oncology unit back in NC (it was good to see you last week!) - sticking your patients with needles is NOT easy work on some patients - I needed to have specialists to get my IVs started.

The dye study was pretty neat - I was sent up to the same surgical area where I had my port installed back in July 2006. I wish that I could have had a copy of the fluoroscope image that clearly showed my port and catheter in great detail. The image showed a flap of tissue over the end of the catheter that looked like it was approximately 1 cm x 1 cm. It's no wonder that the rattlesnake venom treatment didn't work - there was just too much stuff to dissolve. The surgeon indicated that this was pretty easy to fix - he could just cut off the flap. This would be simpler than removing the old port (nothing wrong with it) and installing a new one (I was disappointed that I didn't get the chance to "upgrade" to a fancy new titanium "power port" though). I don't remember much more after this - I got shaved some more (which should have me scratching like a professional baseball player later this week) and that's all I remember until waking up again back in the recovery area. While I was conked out, the surgeon fished a probe and cutting tool up my femoral artery (near my groin) all the way up to my shoulder, clipped off the offending tissue and removed it (see diagram to right - the bright ring in my shoulder is my port). I still can't figure out how he did it, but whatever he did, it worked. I spent the next several hours sleeping off the anesthesia in the recovery area before heading back to the treatment center for one more shot. So now I'm ready for the next treatment in two weeks, with no need for wild gyrations or rattlesnake venom to get the bad stuff put in.

And I'll need some more bad stuff put in - my marker number went up to 21, which may be because I skipped a week of treatment. Whatever the reason, it's obvious that we're still not done, and so I'll keep on with the treatments.

And thanks to Dr. Feldman and his team for the nice visit in surgery - I'm a satisfied customer.

Christmas time is here...

noreply@blogger.com (Bob) — Mon, 24 Dec 2007 00:27:00 +0000

...and my present is a week off from chemo. Well, it isn't really a present that was given to me. I'm taking a little time off from chemo and from work over the Christmas holiday to visit friends and family. It's been a hectic week trying to get everything done - last minute shopping, end of year projects at work, end of year bookkeeping for taxes (ugh). I'll be ready to kick back and relax a little, catch up on reading, catch up on long overdue correspondence (including Christmas cards which will end up arriving after the holiday - sorry about that), and SLEEP. The sleep part sounds pretty good right now.

I had to include the Christmas PET scan this week.

And I offer no explanation for the last picture other than some holiday silliness. I hope that you all have a Merry Christmas.

Happy Holidays

noreply@blogger.com (Bob) — Sun, 16 Dec 2007 08:15:00 +0000

Thanks to my good buddy Angela for stopping by after her radiation treatment on Thursday to bring decorations for my IV tree - garlands and candy canes hung with my meds all day - a cancer Christmas tree. And I do mean all day - it was a long one. My chemo port was clogged, so we had take some extra time with the "rattlesnake venom" treatment to clear the clog in the catheter - all in all, about a 9-hour stay. But as bad as that sounds, it really isn't. I have lots of friends there and we drag our IV trees around the treatment center and visit each other all day - a kind of cancer block party. I don't know if this is something that happens on days when I'm not there, but I'm glad they let us get away with it. We learn a lot from each other and generally create a pretty good vibe in a place that might not ordinarily have one. As bad as cancer is, one of the gifts it brings is being with these people - the patients, nurses and doctors - they're all just the best.

This week by the numbers - marker up slightly at 7.2. I should try to see if I can animate a stock ticker on the side to display the tumor marker numbers. I used to keep a spreadsheet with a running graphical display, but lost track of it - buried in a distant subdirectory.

I am running a belated Hanukkah picture - last Wednesday was the last day, but I thought I'd include it as this week's postscript:

The menorah is a little hard to make out in the image. Sorry about that.

I know you...but who are you again...?

noreply@blogger.com (Bob) — Wed, 12 Dec 2007 04:58:00 +0000

How many times have you had that awkward moment - you meet someone that you haven't seen for some time, and for some reason, you just can't remember their name. For cancer patients undergoing chemotherapy, this happens more than we'd like to admit. It used to sort of a patient's joke about having "chemobrain" as a way to explain a little forgetfulness, but studies done in the past few years have documented effects of chemotherapy on the frontal cortex of the brain. There isn't a lot of data on this - the few studies out there have been done with breast cancer patients - they tend to live longer and hence are a better study population than patients with other forms of cancer. It's not clear which part of the overall regimen is responsible for the interference with the frontal cortex - it could be any of a number of things that have managed to cross the blood/brain interface. It could be the cytotoxic chemo drugs that kill actively growing cells; it could be the steroids or other meds given to minimize the side effects; it could be from a combination of these and other drugs administered. For women, it may also be an interaction between hormone changes with menopause interacting with the drugs as well. For patients with extreme fatigue, it may be confounded with altered sleeping patterns. Whatever the precise reason(s), it can mean problems with learning new tasks, performing multiple tasks simultaneously and short term memory loss. The good news is that there is at least one study that indicates that this condition may be reversible to some exent when treatment is completed. I hope they're right.

I'm sure that chemo has probably affected me to some extent. I find myself struggling sometimes at work and in social situations to come up with names of people that I don't interact with on a regular basis or sometimes with people I've recently been introduced to. I probably owe an apology or two out there when I've failed to make proper introductions, but I just drew a blank with your first name, or last name or both. If you give me a minute, you might be able to imagine my short-circuited brain trying to feverishly reconstruct our relationship in the convoluted manner that helps me figure it out:

I worked with you or someone in your work group on a certain project that triggers a series of relationships that associate you with perhaps as many as three or four people before I figure it out again. I know you from church because your child was in a Sunday school class that my daughter helps out in or that my wife had you volunteer to be a Sunday school teacher, so I try to associate you through a relative.
You used to ride on my vanpool, so I sneak a peak an old email or ridership report (I still do the bookkeeping on my vanpool, so I have records that go back for a long time).
Old saved email works great for tracing old threads of conversations that help remember your name.
I should send a Christmas card to the folks at Google - they've saved my butt a few times.
I write down lot more things in my desk journal at work.
I try to put reminders on my schedule to make sure I don't forget things.
I make checklists.
I try to keep my brain working constantly - I may not be physically as able I used to be, I can't afford to lose the brain too because I won't get by on my good looks (you've already heard my whine about the various attractive rashes from the Erbitux).

They all help, along with a healthy dose of fear that I'll drop the ball on something or someone important. I hope that people will understand - I don't want to use it as a blanket excuse for not pulling my share of work and responsibility, but sometimes it takes me just a little longer. Thanks for your patience.

Planning

noreply@blogger.com (Bob) — Wed, 05 Dec 2007 07:10:00 +0000

Sorry I'm a little behind in posting this week - I needed to recharge and catch up on some sleep this weekend. This is pretty typical after a treatment session, and the sequence goes something like this: Get treatment on Thursday (an all-day undertaking), come home a little groggy (mostly from the pre-med drugs intended to alleviate nausea), eat dinner, get ready for bed (lots of steps here - more on that another time). Sleep for about an hour, and then remain awake until about 5:30 or so - the steroids (decadron) I get for preventing nausea tend to make my mind race about randomly but not particularly in a useful manner. I'm finally so exhausted that I fall asleep for a few hours on Friday morning before waking and going in to work. Why bother going in to work at all, you ask? Because that's what I do - I may not feel great, but I actually do get some satisfaction in getting work done, and the decadron does provide enough of a lift to let you physically and mentally do some amazing things. I repaired my roof last year after a windstorm blew a lot of shingles off on a treatment Thursday - something I might not have had the endurance to do without the decadron. I can usually sleep on Friday night - I'm pretty exhausted from lack of sleep, but sometimes the decadron keeps me awake on Friday night as well, and I'm so tired by Saturday morning that I crash and may sleep until I have to go back to the treatment center to get Silent Bob disconnected. The picture above shows me napping, with Silent Bob in the little black case. I may fall asleep again after leaving the treatment center and nap some more on Saturday and into Sunday. I may get a few things done on Sunday, but may also take a nap again. Eventually, I may snap out of the hibernation, but it may take a few days.

I've been taking a little time over the past day and a half to take in a retirement planning seminar at work, with the final session all day tomorrow. For any of you who have this sort of thing available from your employer, I highly recommend it. It's better to take some time to plan ahead well before retirement than to wait until the last minute. It's been a little strange for me to hear that the average life expectancy now may well be up into the age of the high 80's and early 90's, and that you may need to plan on having enough money saved up to support your lifestyle for another 40 or 50 years as a retiree. But I'm probably in a little different place in life than the rest of the class. While none of us can forecast the future and know how long we have to live, I have a pretty good idea what will do me in, and that there's a very good chance that I won't live to be an old man. Living to age 80 or 90 is probably not going happen. This doesn't make trying to plan your future financial resources any easier though. I need to make sure that my health care needs are covered - they're not likely to go away anytime soon, and they won't be cheap. I need to make sure that my loved ones have enough to survive and prosper after I'm gone. It may sound morbid, but there's the basic fact that treatment is buying me time. If I'm fortunate, it will buy time measured in years. But what if....? What if I'm really lucky and beat the odds for long term survival? What if I really do get into that elite club and survive longer than 5 years (statistically that's only 6-10% of us when the clinical trials were done a few years ago)? How do I plan for something that is kind of statistical long shot? There's a chance I may be able to participate in a new clinical trial in a few months - what if it works really well? Of course, that would be wonderful, but how can you plan with so many unknown variables? Well, the fact is that even for healthy people, the future is still unknown, so I really shouldn't fret. It's going to be challenging to fine-tune a long term financial plan, but at least I feel like I've learned a few things and will be better prepared. And I still like to think that statistical long shots are a good thing to hope for.

For the record books, last Thursday's marker numbers went down again - last measured at 8.6 and now down to 6.2.

Snow in my backyard on Saturday morning

A Happy Thanksgiving

noreply@blogger.com (Bob) — Mon, 26 Nov 2007 04:17:00 +0000

I enjoy cooking. Thanksgiving gives me a chance to play in the kitchen, and this year to extend playtime a few more days with some fresh shellfish. Sure, the turkey was pretty good this year (thanks to my brother Mike for the smoked turkey tips), but the lure of fresh oysters and clams makes even good leftover turkey take a back seat.

We spent Friday afternoon and evening with our friends, the Whites, digging razor clams down on the Washington coast. We didn't all catch our limits but my daughter Meredith (shown in picture) came close, and now has the title "clam whisperer". I'm a little off my game - the chemo has sapped my endurance and I get winded pretty easily, but I can't use that as an excuse for not making a limit - I just didn't see anything that looked like a clam this time out. So the student has now become the master. I did manage to catch a few, and insisted on photographic evidence, shown below as Exhibit B. That rosey glow and bright red honker is not my attempt to play Rudolph the Red-Nosed clam digger - yeah it's this week's latest set of side-effects (more later).

Exhibit B

Earlier in the day, I went up to Seattle with the Whites. While Susan watched their daughter march in the Thanksgiving parade, Tim and I hit Pike Place to track down a sampling of Pacific coast oysters (as promised in last week's post). The selection was limited to two varieties this time around, but that just means that we'll get to go back and try the rest later when they're more readily available. Tim is shown here picking out a dozen choice Kumamoto oysters.

Also available this time around were some nice Pacific oysters shown below before we slurped them down.

Our verdict? We liked the Kumamotos a lot - an unusually sort of creamy texture and almost a little on the sweet side - we'd definitely have them again. The Pacifics were a completely different taste - very briny, perhaps more than we had expected. We go camping every year with the Whites (and a bunch of other folks -many are fellow NC Staters) and dig clams and oysters. We're used to a different kind of oysters - Quilcenes and whatever the monster oysters are at Duckabush Flats on Hood Canal. Now that we've tried a few more, it will be interesting to see what we think of them when we return next June. And the razor clams - we had them today along with the oysters as clam chowder, boiled shrimp, along with Tim's scallops & orzo and fresh sauteed Chanterelle mushrooms. A good and filling time was had by all.

Now the lowdown on this week's treatment. I was puzzled and perhaps a bit concerned last week because I still hadn't had a reaction to my last treatment. I did have an amazing set of itches that were not particularly pleasant (and still aren't). But nothing else until Friday afternoon. As we headed for the coast, my face started feeling hot - just like the first go around with the "nuclear option". Uh oh. The pictures above on the beach show it starting as the rosey red glow, which later felt like someone taking a blowtorch to my skin. I apologize to anybody who saw me today - I look like a cooked lobster (perhaps my penance for consuming and enjoying the seafood???). The rest of the rashy skin breakout is now starting as I write this. The Jekyll and Hyde transformation begins again... A warning to my coworkers - I may not be pretty on Monday - the setting looks like it's going for maximum ugly again. I can't wait to see what I look like in the morning.....

A Bird of Paradise at a flower stall in Pike Place.