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

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

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....

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....?

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.......