A message from Amy & Andrea

Very sorry for the delay in getting this posting...Apparantly Dad's password for blogger was different, and it took a bit of hacking. 

We are very sorry and saddened to write that our father lost his battle with melanoma this past Sunday night.  He was at home, in peace and out of pain, and that is more than we could have hoped for. 

Thank you to everyone who supported Dad in his last months.  A celebration of his life will be held this Saturday, December 5th from 4pm to 7pm at 391 Terry Ave N, in Seattle. If you can't join us, please try to raise a glass where ever you are, and toast a life well lived.

Met w Dr Margolin today, status OK

I'm a guy that has been an excessive sweater all my life, and the most uncomfortable thing I'm experiencing right now is perspiration. The Doc says it's probably my body trying to find any way it can to pass fluids out and since the liver is a bit short circuited it's doing it through that method. It can also be steroid dosage, so we'll play with that a bit, plus play with the diuretic dosage. There is fluid retention in my abdomen and we may go in an remove some of it after the holidays. "Only takes a minute and a big needle" she says :-D




When I was in Jr. High I started building things. Plastic car and airplane models were a favorite, and I took wood shop, too. One project was building a model sailboat and then at the end of the year all the woodshop students met for a city-wide "Model Yacht Regatta", which I am proud to say I won (as if that lovely photo hadn't tipped you to that already). The next year ('59 I think) I went for larger scale and built a Soap Box Derby Racer. What a grand project – big slabs of wood and masonite and nuts and bolts – all a kid could want. The rules said the car was to be the product of the kids, with only safety related things being done by an adult. That suited me fine and the sleek Fred Flintstone lines clearly show no adult involvement in speedy “Day and Night Market #3”. What a surprise when I showed up at the start! A lot of sleek products came out of the backs of station wagons it occurred to me some of these cars were not “primarily” build by 13 and 14 year olds. Didn’t matter. It was swell fun, and even more fun running it down the dirt alley behind my house until it self-destructed ! .

Growing up in San Diego

What could have been better?  Between 6th grade and graduation from high school I never lived more than a few blocks from the beach in Point Loma.   And we southern Cal kids invented the skate board by taking our old steel clamp-on skates and nailing them to 2 foot lenghts of 2x4.  The steel wheels wore out on the concrete sidewalks in about a month, and they had absolutely no traction, but we took them everywhere anyway.

In junior high and high school the music was still holdover from swing - the Beatles didn't come on the scene until '63 or so.  It was the Kingston Trio, Limelighters, Peter, Paul and Mary and other folk groups that we listened to and I was interested in, which led me first to the ukulele (I had a cheap, plastic one as my first instrument and taught myself classics like "Five foot Two") and then to the guitar.  A few of us formed a folk group as an excuse to get together and goof off and that was great fun.  It also led to a ride home in a police car.  I was with my pals and had to take the bus home.  Got off the bus to walk the few blocks and was picked up for a curfew violation and got a ride in a black and white.  Very exciting, though not at the time ;-)
Somewhere when I was about 15 or 16 my interest in guitar moved to classical.  I heard an album by Laurindo Almeida and loved it and started teaching myself how to read music and saved for a classical guitar.  Never went back to folk after that.

Finally looking like a car

I have the suspension, wheels, engine firewall and radiator placed now. Turns out the radiator is too far forward and I have to move it, but lots of other tweaks in placement/alignment of the firewall and dash are still ahead. But it's getting closer to where I will be doing body work and not chassis work.




Have felt OK the last few days. Called the nurse about the left leg swelling and we upped the diuretic for the weekend. It has helped. Meet with Dr Margolin on Tues for a checkover and infusion of Zometa. Otherwise taking it easy and relaxing. Amy and Jane hung around and we watched Food Network last night and Andre leaves for her IronMan late Monday.



Naturally when you get to where I am you think about where you've been. A really vivid recollection as a kid is being in the back seat of my grandfather's jeep singing "Don't Step on my Blue Suede Shoes". I assume Jim was with me. My grand-dad was a mail carrier in rural Mississippi in the 50's so it was a real treat to ride around with him, and I guess I have to admit that Elvis may have been an important part of my life-long love of music! We would have been living in El Paso, Texas, then. My mom and dad met at a USO dance in Los Angeles during WWII. My dad joined the Army December 8, 1941 and worked as an airplane mechanic at Van Nuys Army Air Base. He stayed in the Army after the war and was eventually working at White Sands Proving Grounds firing the earliest of US missiles like the Nike Ajax around the southwest desert while Jim, Dave and I grew up in El Paso. Being in the Army didn't pay much so my mom worked and we had a long string of Mexican maids that would come take care of us and cook. And that leads to perhaps another passion of mine - food. I started learning how to cook Mexican food under these excellent tutors as soon as I could reach the stovetop. The summer of 1957 was a turning point for us. My dad was offered a job at Convair in San Diego to work on the next level of missiles and he accepted the job. It was monumentally exciting. He went out and purchased a brand-new 1957 Chevy Two-Ten station wagon and drove it off the showroom floor. So before 6th grade started for me we had traded west Texas desert for the surf and palm trees of Ocean Beach, California.......

 

Things OK, Alfa coming right along

It's difficult to get the wonderful detail of the Alfa across.  Here are four pictures showing where I'm at now.  The Engine is finished for the most part and is ready to be installed in the chassis.  Front and rear axles and suspensions are finished.  The brake shoes are done (they are the silver things on the round plate - just got painted yesterday.  The main project right now is to assemble the main elements of the car except for the body panels.  That will allow me to move into the next step of fine tuning where the dash, firewall, seats, etc fit.  Lot of detail to do there.  All that so I can put attention into fitting the body, doors, bonnet, etc.  With almost 2000 parts in this kit it is very detailed, and all of them need some sort of tweaking or tuning before they meet muster.  A perfect thing for me to be doing and I'm enjoying it a lot.

Feeling OK, some pain in the side increase.  My hospice nurse, Temma, is coming by this afternoon for her weekly checkup.  Leg swelling is still an issue and I feel quite boated and tight in the abdomen.  Also beginning to get a rash on my ankle. Had another small dizzy spell a couple days ago, so have officially stopped driving and I'm very careful on the dock, always with my cane.  Don't know how this is going to end but drowing is not part of the agenda ;')  Started off a nice, sunny, cool day here in Seattle and at this moment I'm enjoying having Julia Child's dvd's on.  They were the gift for renewing Public TV.  What classics!

Decent couple of days, getting away from all the other social sites.

Before we go on, Blogger removed the spell check from these postings. I apologize in advance for more errors than usual. The meeting with hospice on Wed was fine, and then I met with my ongoing hospice nurse on Friday. It’s shown positive results even! Right now Tamma’s (the nurse) job is to keep on top of my meds – make sure I have the right quantities on hand and we’re clear on dosage time and amount. She took care of a quantity imbalance by ordering some more, and then we addressed the issue of bowels. This is part of the journey no one really wants to talk about, but getting plugged up is a real issue with such large quantities of pain killers in my system. Temma put together a plan using regular, over the counter stuff, and yesterday I had relief! Yea. And what was also good is I found the hospice nurses really are as quick to respond as they said they would be. This a.m. I called again to discuss continuing approaches to the colon issue and she (one of the on-call’s anyway) called back within 30 minutes with an answer, so now I hope to keep that under control and I’m pretty confident that my questions will get answers quickly.


Had a bunch of people drop in and say hi and had dinner with my ex-brother in law. Tonight (Sun) I’m having dinner with Rick and Joyce before they leave for Italy. They will be gone two weeks and during some of that time Andrea will house/cat sit so she’ll be next door until she goes down to Cozumel for her IronMan Triathlon race.



Before we go on, Blogger removed the spell check from these postings and I apologize in advance for more errors than usual. I'm also as confused as anyone why some of you can post comments here and others cannot. As always, feel free to email me any time with your feedback and questions and I promise I'll get back to you. I went on sites like Facebook, LinkedIn, Classmated, etc and am not going to respond to input from them any more. Too much to keep up with so this blog, my personal email and occasional posts to the MPIP bulletinboard are my links to the world now.



The meeting with hospice on Wed was fine, and then I met with my ongoing hospice nurse on Friday. It’s shown positive results already! Right now Tamma’s (the nurse) job is to keep on top of my meds – make sure I have the right quantities on hand and we’re clear on dosage time and amount. She took care of a quantity imbalance by ordering some more, and then we addressed the issue of bowels. This is part of the journey no one really wants to talk about, but getting plugged up is a real issue with such large quantities of pain killers in my system. Temma put together a plan using regular, over the counter stuff, and yesterday I had relief! Yea. And what was also good is I found the hospice nurses really are as quick to respond as they said they would be. This a.m. I called again to discuss continuing approaches to the colon issue and she (one of the on-call’s anyway) called back within 30 minutes with an answer, so now I hope to keep that under control and I’m pretty confident that my questions will get answers quickly. From here on Temma will drop by weekly unless I need her more often. The nure also put a package of meds of the "just in case and to have handy" variety and shipped it to me. Standard operating procedure for hospice, I guess, and insures they have what they might need in case of emergency.



The social worker came with Temma, too. At this point I don't feel strong need of her services, but you can't ever be sure. They can also provide a chaplain but most of you know this service is not a high priorty for me. That said there is a famous saying that there are "No athiests in fox-holes" and I certainly appreciate all the prayers being said on my behalf. Had a bunch of people drop in and say hi and had dinner with my ex-brother in law. Tonight (Sun) I’m having dinner with Rick and Joyce before they leave for Italy. They will be gone two weeks and during some of that time Andrea will house/cat sit so she’ll be next door until she goes down to Cozumel for her IronMan Triathlon race.



Laundry is a place I 'm going to need help with and Amy was a big help with that and changing my sheets, etc. Plus she took my ironing and John tossed that in with his stuff and it all got professionally done so all my shirts came back looking like I still work for a living ;-) At any rate, I think I may have to discontinue my current housekeeper and Amy and An are going to work something out with housekeeping, laundry and ironing using her crew for pick up & delivery, plus Amy's crew is two people and they can blast thru my place quickly.



Also giving thought to using some blog space here for modest reminisce. I spend a lot of time in bed with memories going through my head. When you start cataloging all the changes the last 63 years have undergone I may share some of the most vivid ones. Won’t be the Great American Novel (or Julie and Julia), just some things I remember that might be amusing and that even my kids haven’t heard (tho I doubt that).

A week of challenge...but what's new about that?

The road continues to get bumpier but that shouldn't be a surprise, should it?  I had two days or so of realtive comfort, and them started getting some swelling in my left leg and ankle. Then Sunday I started getting pain right at the edge of my ribcage on the right.  By Monday night it was pretty uncomfortable to take a deep breath, but I already had a Tues follow up so we waited and went over it all w Dr Margolin on Tues a.m.  After looking at everything we think the side pain is because of all the stuff in the liver that is getting irritated by the bloating, etc.  As in the past, all we can do is try to relieve it, so we bumped up the morphine dose again and added something for a diuretic to keep the swelling at bay.  Now I'm at 45mg of slow release with the 15mg fast plus steroid.  Plus somethimg for the consitpation (yuck), that has yet to work.

Getting things going with hospice and have a meeting at my place tomorrow (Wed) a.m.  Hoping I can get some help with household duties like laundry and cleaning maybe, and I now they can do lots of other stuff, too.  I have a cleaning person every other week, but combining duties would make things better, I think.  I do have home nursing available if I need it and they may be able to guide my on that when the time comes.  Should be an interesting meeting! 

My model car is turning out to be a godsend, because it gives me something to do and think about that I enjoy.  Fishing is out (two of my buddies are hitting the rivers for steelhead as I write this), because I can't wade, but goofing off with my Alfa is perfect.  I'm going to start painting the chassis in the next day or two and will post more pics.

Home again with better pain relief now

Wednesday night I was finally released with a new plan. The scans showed noticeable spread in my spine in the last three weeks, and some new tumors, too. That said, the pain and weakness is the result of the original tumor in my L3 vertebrae. Because it has already been subjected to radiation it won’t respond to a second dose. Surgery is out, as is gamma knife. So the only thing we can do is step up the pain relief to the next level. I now have two morphine prescriptions – one fast acting and one timed release, plus a high powered steroid for inflammation. So far (except for a slight confusion as to timing yesterday) they seem to be working. I take each twice a day at the same time, so by tomorrow it will be a convenient schedule and should work out. Today I’ve been just fine so I have my fingers crossed. Tues I meet with Dr Margolin and I guess I’ll be seeing here more often rather than less.




The hospital stay was interesting on a variety of levels. First, I continue to be very satisfied with the UW hospital staff. And because it’s a teaching hospital I saw a LOT of docs, residents, fellows, senior muckity-mucks and medical students with their advisors and mentors. A particularly good meeting was with a 2nd year student for about an hour and a half. I don’t know how many terminal patients he’s had face to face with, but it was good for both of us and I felt quite pleased that the advisor brought all four students in later on to meet with me to get my perspective.



What happens from here? The girls and I agree that we want to make it possible for me to stay in the houseboat as long as possible. Amy has offered her place if the time comes, but the problem is the stairs, plus my place is so cool I really don’t want to move unless I have no choice. Rick and Joyce (my neighbors/friends/landlords) are wonderful. The weakness is not going to go away and Joyce recalls some of the issues she had when she was fighting leukemia here, so they are adding grab bars in the bath and some really cool, nautical but useful rails outside and on the ramp to minimize my risk coming and going. I don’t need them now, but will eventually. And what’s still sort of ironic is the place the melanoma is actually most dangerous is the stuff in my liver, but so far no manifestation of those. Keep your fingers crossed!



One more change is I really have to refrain from driving. Not only am I constantly on high doses of morphine now, but I worry about the brain tumor acting up unexpectedly, so I won’t drive unless I absolutely have to. I did get a handicapped permit I can use and Joyce, the kids and my friends will all ferry me around so I should be OK. Plus I have a deli and several good restaurants within walking distance. Should be no problem, but no more Porsche cruising, I guess.



Enough for now. Good to be home, going out to the movies tonight and dinner with a buddie tomorrow, so back to normal.

And just like that you're in the hospital again...

Fishing weather was perfect - cool, partly sunny, not breezy and I caught one nice sea-run and Ken caught two in the 20" range before the tides pushed us off the beach.  So Monday was a nice day for fishing but I could not seem to get the pain out of my left leg and it was very difficult to climb in and out of the guide's truck.  That night I found I was taking 4 oxycodone with no effect and Tuesday a.m. was back in the SCCA offices asking "OK, what now?".  The answer is I'm in a UW hospital bed for a couple of days and now it's the docs playing mad scientist.

{Spoiler - a good portion of this paragraph is very detailed stuff about meds and timing and pain and is here more for my MPIP followers, so you can just pass if you don't want all this detail}  I checked in about 2:30pm and Amy  and An came along with all my stuff like laptop, changes of clothes, etc. and hung around until about 6.  The plan is to get the pain controlled with morphine and steroids and then get me in to have more MRI's done on my spine and also brain (more on that later).  But I learned a good lesson why you should not allow yourself to get as dehydrated as I was/am - it took almost an hour for three nurses to get a satisfactory IV in me for infusion and blood tests.  I was so dry my veins were not co-operative at all.  By the time the third nurse (this time the IV Nurse Specialist) got one in I'd been poked four times unsuccessfully and one time semi-so.  Whew.  It was too late for any scans and I'd gone from pain being at a 7-8 to an 8-9, during that time.  We started with a 2mg injection of morphine, then another 2mg, then another 4mg, and that finally got me down to tolerable pain (4-5)  A couple hours later another 4, still just tolerable relief, then 2 hours later the pain actually started in increase with 4 so they put me on self-administered drip.  I find 6mg seems to work, and then was actually able to sleep 5 hours and just woke up an hour or so ago feeling fairly good and pain free.  I'm gradually getting 6mg back in my body and we'll see.  And then we'll be off to do the scans this morning some time.

About the brain thing.  On Sunday I had a little incident, lasting only a millisecond and not since repeated, where for just a moment my body gyroscopes turned off and I veered off course.  Didn't fall or pass out (was near something to lean on) but a bit concerning nevertheless.  So we'll take a closer look at the brain tumor and see if there has been any change there. 

What we will do after all these scans is speculative so I'll just sign off now and we'll talk again when I know more.  Take care - time to try UW Husky Hospital breakfast - Go Dawgs!

An improvement

LOL - sometimes I feel like a mad scientist experimenting on my own body!  I know I got the pain relief I needed from 4 oxycodone, but I was also feeling a little out of sorts still and yesterday I was going around with Amy buying new (smaller) pants and was still feeling back pain and was pretty frustrated.  Amy's been suggesting I see a pain clinic, and I do know the over the counter pain relievers approach pain in different ways than each other and than the oxy.  So I decided to go into the pharmacy and ask the pharmicist for some opinions on the over the counter stuff, especially as it related to anti-inflammitory relief.  She said the best for that was Aleve or Advil, so I got Advil and it really helped!  Today I've taken two oxy and two Advil and feel relatively good, so keep your fingers crossed.
I think my next step is to talk with the doc (I can probably go through the nurses for this) and get whatever is needed in writing for me to start working with the hospice people.  Based on my conversation a few months ago I think they might be able to supply good resources, not only medical and pain relief related, but for help maybe in housekeeping, ironing, etc.  At any rate I should follow the advice and take advantage of whatever I can now that I'm "eligible".
Going fishing tomorrow, seeking the elusive sea-run cut-throat trout from the beach somewhere in the south Puget Sound.  Naturally the weather today is really nice..it will probably be back to normal rain tomorrow!

Ouch

Yesterday was not such a good day. Of course, it always works this way...I see the doc and we talk about pain and while I am in some it has been fairly consistent and increasing in very small doses. Not yesterday, though. For some reason my body (particularly my spine) decided to let me know it's unhappy, and in no uncertain terms. My back pain went through the roof, and traveled down my left leg to just add some spice. So all day I was trying to find some combination of drugs that would keep it at bay, and since that's a waiting game, and since I really don't want to OD on oxycodone or Tylenol, I didn't find the solution until almost midnight. That was when I took four 5mg oxycodone (twice what I've ever taken before). And when it took effect it was such a relief it almost brought tears to my eyes. With that confirmation that the little beasties are churning away even more I have had to change some of my 'potential' plans, and it pretty much puts travel on the shelf. I don't want to be out of the country for sure, and while I was rekindling my idea of the "Great Road Trip" driving to the East Coast, I just can't do it. So looks like I'm going to hang around here. The Alfa is coming along swimmingly, so plenty to keep me busy, and plenty of ideas when I get it done. And as if the Big Guy knows I need things to do, my desktop crashed and I'm spending time trying to recover what I can from it. Oh well, I need to pare down to just one computer, so when I'm done I'll just operate from the one laptop.
 Hope you all have a scary Halloween!

Keeping busy with my Alfa

Here are some pictures of my latest project, as promised (the pic of the finished model is from a website - mine will ultimately be a bit different, but still red.).  It's a 1/8th scale 1932 Alfa Romeo 8C 2300 The kit is made by the Italian company Pocher (pron: Poker), now out of business.  These kits are, as a result, only available on the internet and there is quite a business in the kits and after-market parts. .  Th 8C Alfa was a desirable '30 sports car that had in impressive racing history, too.  Only a few hundred were ever made, so today the real thing is well over a million dollars.  I'll stick with the model.  When it's done it will be over 19" long, and has such details as accurate brakes, turning crankshaft and pistons in the engine block, had-made wire wheels, real leaf springs, custom leather covered seats and more that only other Pocher geeks will notice or appreciate.  But it's great fun and gives me something to focus on now that the weather outside is getting a bit dreary.  The pictures here show the chassis, engine and my roughing in of the seats and upholstery.  A fantastic website related to Pocher is http://www.modelmorotcars.com/ - check it out.

In regard to how I'm feeling, the chemo is making me feel lousy for the most part (duh!).  My weight is hovering in the low 160,s but eating is still a problem for me and I think that now it's a result of the chemo.  I meet with the doc this afternoon and we will have a discussion about it - I mean, unless the chemo is going to have a real possiblity of making me live longer (doubtful) the don't I want my remaining time to be as enjoyablbe as possible?  I've got an opportunity to go to Italy for a few days, maybe visit friends in the east coast and cruise over to the Bahamas...and I can't do this if I don't enjoy eating, right?  Decisions, decisioins.  I'll post how the meeting goes and maybe my decision later today or tomorrow.  Enjoy the pics - clicking on them will enlarge them, as you probably know.

Friday - 6th chemo day and things OK

The nice thing about not being laid up doing IL-2 is I went fishing in Eastern WA on Tues and Wed. As the picture attests, it was fun and successful - that's a 15" brown trout. It was not without incident, of course. On Tuesday I was on the river alone with the guide and after about three hours I got hit with a dizzy wave that must have been a side effect of the chemo. I could hardly walk and put one foot in front of the other for a while, so I told the guide we had to pack it in. In about an hour I felt better but still just rested that afternoon. I picked up my friend, Ken, at the Spokane airport that night and on Wed I did just fine. I'm sure I scared the hell out of the guide...he probably thought I was having a heart attack and would have to explain to the fish and game guys why his client was sort of dead. That wasn't necessary, of course and the trip turned out to be a success with several fish caught by each of us on both dry and wet flies.
The rest of the week I've been taking it easy. Went to the funeral of my good friend's father, a going away party for the executive chef at Portage Bay. No other side effects from the chemo, but no appetite so eating is still an issue. Boy, I hope that gets better soon because it's the most frustrating thing of this whole time - I WANT to eat, I just can't and what I do doesn't taste good.  A lot of the fun of life is removed when you can't enjoy food an drink with your friends and family.
Now that the boat is finished I'm spending my time on the Alfa - pics of that next time.

Misc. thoughts on a Sunday night

First I want to state again how important it has been and is for me to have such supportive friends and family. Thank you, thank you!!
Second, an observation about health care. I am SO lucky to have good insurance and I'm an example of why we need insurance reform in the U.S. so no one has to be bankrupted by getting what I've got. Just two examples give you an idea how horribly expensive this is if you dont have insurance: my two radiation sessions were over $35,000 snd I just picked up my Temodor chemo prescription (will take the first pill tonight) - 28 days is $7700 - about $275 a dose. Because of my fabulous coverage through the Swatch Group my out of pocket is virtually nothing - but it still makes me incredibly aware of the need so many other people have to be protected in the event of catastrophic illness such as this. So be kind in your opinions about health care reform - someday everyone will need some kind of help and it should be affordable and available. OK, I'm off the soap box.
Had curry and birthday cake, plus ate a tuna sandwich today...yea! I'm not 100% but getting closer to enjoying food again. I'll let you know how the chemo goes later this week.

IL-2 cancelled

Amy, Andrea and I met with Dr Margolin to review my scans Friday and it was pretty bad news. They revealed something I suspected - I've got it in more places now than one of Dick Chaney's hunting partners has buckshot ;-). It's spreading like crazy on my neck and I've got some visible spots appearing on my cheek, plus it's all around my lower neck, down through all the lymph nodes along my spine, in my spine, back, spleen and now in the worst possible places: a small one in my brain, three in my lungs and many in my liver. Yuck. It's too far advanced and spreading too fast for the IL-2 to have even the tiny chance it would usually have. Well, at least that means I don't have to spend a month in hell doing IL-2, eh?





So she's putting me on a chemotherapy pill called temozolomide, aimed primarily at the brain tumor to try to slow it down some. Not anything else they can do, unfortunately, except make sure I've got plenty of percoset, which I do at the moment. The temozolomide (we've already begun calling it the "tamale" pill) is supposed to have minimum side effects and Dr. Margolin is prescribing an anti-nausea drug to take care of the worst. I don't think I'll lose hair, but we'll see. And get this - it's supposed to suppress your appetite, just what I need. She'll see me every two weeks now to see how I'm doing and we will probably scan the brain tumor again in a couple of months to check on it, assuming my body hasn't begun to tell me it's there before then.





As for the lung and liver mets, I'll just have to wait it out and let Margolin know as I feel the effects and we'll deal with them as they arise, mostly with pain killers I suppose. As far as remaining time goes it's pretty much agreed that it's less than 6 months. Now my challenge to to try to make the most of them. I may add a uke fest or two, though this mess on my neck and cheek are making me uncharacteristically self-conscious.





"So what's my state of mind?" you may ask. It is reasonable to start second guessing decisions at this point, especially timing of treatments, and make one's self crazy with 'should-haves'. But by now you all know that I don't do that sort of thing too much. Naturally one speculates on such subjects, but if you get carried away you go crazy and for what? You can't change yesterday and I'm content living with the results of the decisions I've made. Remember, the odds of IL-2 working were tiny anyway, so why beat yourself up for putting it off and then finding out it is too late? I've been mentally ready for the information I got yesterday for some time, so it wasn't a shock and I'm not going to go into depression or change how I live. If I have a concern it's how friends and relatives will deal with it now that we know the worst, and my hope is they will deal with it as they have all along - just be normal, as I shall try to be.





That's it for now. Since the next month will not be filled with drama requiring blow-by-blow commentary I will post probably weekly to let you know how things are progressing, and to show you pictures of my now finished America and the now in progress 1932 Alfa Romeo in 1/8th scale. Plenty to keep me busy. I can't thank you all enough for your support, it means more to me than you can imagine.

IL-2 starts Oct 12 or 13

Met with Dr Margolin yesterday and we set the start date for il-2 as Monday the 12th or Tuesday the 13th, depending on the hospital bed availability. Could have started as soon as next week, but she wants my weight loss to stabilize a bit. I'm holding at about 165 now, which I haven't weighed in 20 years, and my ability to eat is very slowly coming back, so in 10 days I hope to be much better in that regard. I'll get a set of baseline scans next Thursday then meet with Dr Margolin on Friday.

The routine will be two days of il-2 administered every four hours until they feel I've reached my tolerance level, probably 9 or 10 doses, with 12 doses max. This is done in an intensive care section of the UW hospital. Then three or four days later they'll let me out of the hospital and I'll rest for 8 or 9 days after which we'll do it again. Amy and Andrea will be with me a lot of the time in the hospital. I'll probably stay with Amy right after I get out, and then go back to the houseboat for a few days.

In the meantime my model of the America is coming along swimmingly. Painting is done, masts are raised, all the deck fittings are in place and I've started rigging, which I think is the most fun part of the project. It'll be done before I go into the hospital, one more item off my bucket list!

The pic shows the bowsprit rigged and start of the forward shrouds. The other pic is me with the Hubbard glacier in the background.

Well, it seemed like a good idea at the time.....

I'm back. What a disaster! Unfortunately the antibiotics, while doing the job they were supposed to do, didn't do any good at helping during the cruise. I may be the only person ever to go on an 8 day cruise and lose weight, but when I got home I weighed 7 pounds less than when I left. I never went to dinner, and could only manager a little bit of soup (room service) or an occasional Coke. Kind of a waste of a good cruise, but who knew? There were good points: the Hubbard Glacier was quite impressive and the ship got the closest pass at it of the year, and the gambling gods smiled on me even if the food gods didn't, so I was able to hang out at the casino and do it on the ships money, at least.

Of course, when I got back I was in a bit of a state, so I spent yesterday afternoon in the ER at the UW hospital. By the time I left I was assured I was actually OK and not seriously enough out of kilter to require hospitalization and IVs. I do continue to have anorexia and it's a struggle, but it IS improving in very small increments. I was very proud of myself that I ate half a breakfast bar and some jello this morning!! Stocked up on Ensure and soup. Won't be able to eat enough to stop losing weight for probably a week...so not very company right now. Probably the worst of it is what I do eat doesn't taste very good.

The area on my head may have shrunk a bit more, but is awfully ugly, and I cover it up with a knit hat when out most of the time. And as they predicted I started losing hair around the radiation spot, but it's not too bad. Just have to use the cat roller on my pillow every morning. I get another Zometa infusion to strengthen my spine again on Friday. Now my agenda has to turn to all the things that need to be done for IL-2. Dr. Margolin is out of the country until the 1st, and I still hope to start it on the 6th, but that date could change, just like everything else in my life! Oh well...I really shouldn't complain because I'm sure not the first to have to deal with this stuff and I have been pretty lucky so far.

Gearing up for Alaska

Nice to have the radiation over with. Ugh. But it seems to be having a positive effect and the area seems less swollen. They think that will continue, so maybe children won't run away screaming after all. The doctor also thinks it unlikely that the melanoma will bust through, which was the point of the exercise in the first place, so good.

Tomorrow I leave for the Alaska cruise on the Celebrity Mercury. And my docs may have come to my the rescue in the taste buds department!! After reporting how my taste had deteriorated (what the hell, I guess we all get more tasteless as we get older...) the doc said "let's take a look'. And lo and behold I've got a yeast infection in my mouth. I guess it's fairly common for cancer patients. They put me on some high dose antibiotics and overnight I could tell a substantial difference. Can't say things taste GOOD yet, but least not so lousy. If the antibiotics work I may be able to enjoy some of the food on the cruise yet.

Probably won't do too much blogging on board. This is not a travel blog, anyway and I'm really looking forward to mindless relaxation, having my bed made for me and three meals a day I don't have to do anything but sit down for. Loaded up my new gaming laptop with lots of stuff and borrowed some DVDs from Rick and Joyce.

I get back on the 21st and Friday the 25th have another Zometa infusion and meeting with Dr Margolin and will pin down the rest of the tests and IL-2 start dates for certain, still probably Oct 6. It will be here in no time, wow!

Only two Rad sessions left

Holiday weekend over and it was pleasant visiting family and friends here and Oregon. The worst side effect I'm having is my taste buds have all but disappeared and everything tastes sort of off. Who knows what the wine I bought at a couple places in Oregon will actually tasted like?
When I met with the docs yesterday they all looked at me again and there is still some concern that the swelling hasn't come down much, but it will probably get better since there is a lingering effect from the radiation for a couple of weeks. At least no dizziness or balance or ear problems. The most unfortunate part is it's just so dog-gonned ugly, like someone hit me with a baseball bat right behind the left ear. I think I'm going to try to cover it up for my cruise. It's not only vanity, but who wants to look at a big, black melanoma at dinner? I really don't want to eat alone so I'll do as unobtrusive a bandage as possible. I had some fun with the nurses getting them to trace around the area so I can experiment. I'm also going to go over to
REI and see if maybe they have some lightweight neck warmers that can be pulled up like turtlenecks. May look a bit odd, but better than causing people discomfort at dinner.

Otherwise I still feel fine and look forward to the last two sessions today and Thurs. Then the doc will do a final exam on Fri and give me whatever I might need for the cruise. He's worried there is still a chance for some breakthrough and oozing...great. Oh well, each day is an adventure and I'll deal with it if it happens.

Better living through Chemestry!

Wow, what a difference anti-nausea drugs make! It's amazing what a positive attitude you get when you don't feel like you are going to throw up all of a sudden. What with taking them and the steroids I not only feel 90% better but have a bit of an appetite now, so maybe I'll stop losing weight. It's not like I didn't need to lose it, but I don't want to have to buy a whole new wardrobe, either.

My brothers got here today and we had an very nice time. Took them on a cruise around the lake and goofed off and had a nice Italian dinner at Pomedoro on Eastlake. It's worth a try for you locals and within walking distance from my place. Then came back and talked and had a nightcap on Rick and Joyce's upstairs deck as the full moon came up. Tomorrow it's the fresh cinnamon rolls at the bakery up the street, then the casino for some gaming action, then shopping for dinner then my radiation then making enchiladas at Amy's. Should be fun and it's great to feel OK.

Ugh -but interesting

Today will be the 5th blast, and ugh, this stuff is not fun. I now know how lucky I was with my back, because this time I feel pretty crummy. Not 'can't function' crummy, just 'can't stand the though of food' crummy. And you know me, I'm a FOODIE. AAAGH! Got on the scale yesterday and I've lost 15 pounds since I started radiation on my back just short of 6 weeks ago. It's weight I could afford to lose (heck I was tipping 190!!) but this is a weight loss program I don't recommend. At 175 I fit into all my clothes and look fairly good, so I'm doing my best to try to not lose too much more.

Yesterday Andrea came with, and we had a meeting with the docs after the treatment. The Oncology Resident, Dr Barti, did a great job going over the radiation program on the computer and after I told how I felt they prescribed some anti-nausea meds and some steroids. Those should help with the anorexia (yep, they used that word...me and Karen Carpenter, who knew?).

And today I can say I feel a bit better. Not 100%, but not "shoot me" either.

I do have to say my vanity comes up when I think "Heck, I wish this thing weren't so damned ugly", but at least it's not in the middle of my forehead, so thank God, Zeus, Buddha or ______ (fill in with favorite deity) for small favors. I asked the docs about expected appearance changes and they think even if the radiation does the trick and slows this down a bit I'm still going to have the black splotch. So we'll just have to take care of it after the IL-2 does the job, eh?

My brothers arrive tomorrow. This will be the first time the 5 of us (the 6th, Nick, is still in jail in TX....don't ask, that's another blog entirely) have been together except for funerals since 1968. And I know what you're thinking, so put it out of your mind right now!! Jim (older) is now retired from a career in theater, having toured in the past with such luminaries as Tom Petty and Angela Lansbury; David (younger) has lived mostly in Texas and been a truck driver and dispatcher; Tom is a retired residential and commercial landscaper and John is a Lt Colonel in the US Army and I'm not allowed to say what he does, but it involves computers and we can all be grateful guys like him are on the job. All have swell wives and seem to have been better at that gig than I have been.

It'll be fun, especially that I don't feel quite as lousy. Got to jump in the shower and get ready for my afternoon zap.

I decided to post a picture of my current project, the Schooner Yacht America, 1851, in 1/8" scale. This was the ship that won the race and trophy in England that subsequently became the America's Cup. I hope to have all the construction and paint finished in the next couple of weeks and then will start the really fun part, the rigging.

Take care. Keep those fingers crossed.

Half full or half empty?

During lunch with Amy this issue came to my mind and since I'm trying to keep everyone on track with my 'frame of mind' here are my thoughts. Those of you who have known me long know that I have always lived my life in "half full" mode. I'm generally optimistic and expect the best rather than the worse to happen (often even in face of plenty of evidence to the contrary). I hadn't thought about it much lately until it came up with Amy, and the truth is I now am in "half empty" mode. But don't get me wrong, that's a good thing, and here's why:

Since my second diagnosis I've done a lot of research on melanoma, some of which I have passed on here. Much of it involves the question: "How much time do I have?" It's a natural question when you get to this point. When my second tumor was removed and I was re-staged a IIIc, I asked the doc the question and he pulled out (I'm not kidding here) his "Life Expectancy Calculator" and I had a 25% chance of surviving 5 years. That was just a bit over 3 years ago. When the melanoma got into my parotid gland (salivary gland) I looked up the research and the only study I found was a review of 13 patients and 6 of them died within 11 months. Not particularly encouraging, but its been 18 months for me so far. Good. When it got into my spine I found two studies involving about 300 patients and median survival is 3 - 4 months. It's been 6 so far and still counting. And, as previously stated, the chance of the IL-2 providing a sustained remission is only 5%, with another 15% chance of temporary slowing/shrinkage.

So why is being in "half empty" mode good, you ask? Because I don't try to kid myself by wearing rose colored glasses. And when I beat the odds I say to myself "Damn, I'm still kicking...guess I'm on the plus side of the curve this time" If things work according to the odds I'm mentally prepared for it. If I do better, and I have, then I'm surprised and happy. I try to make the most out of every day, every contact with friends and family, every meal. Don't put off until tomorrow etc....

I don't know if I've explained myself well here, but there you go, I just felt like I needed to say it. Take care.

Whew, what a procedure!

Today's Thursday, and I went in for the first scan this morning. Amy came with and the radiology staff were wonderful and gave her the full tour while I was being worked up. Lots and lots of measuring and x-raying and double checking. They made a piece that lays on top of my skin that is made of some sort of gel that fools the radiation a bit and allows them to get focus on the surface. Making that and adjusting took about an hour. Then I went in for the procedure and that took almost an hour what with more x-rays, scans and checking before the actual treatment. Starting tomorrow it will only take 10 minutes or so, though, so that's good. Don't feel any after effects yet and plan on taking it easy for the next two weeks (except for visitors, etc., over Labor Day). Last shot will be Thursday, Sept 10, three days before I leave on my cruise...hooray!



And speaking of the cruises, my friends Rick and Joyce are fixing me up with lots of films to take with. And how's this: Rick is a member of the Academy of Motion Picture Arts and Sciences and votes on the Oscars each year, isn't that cool? One of his documentaries was nominated for and Oscar!! And his dad, Allen Miner, was also a producer and director and worked, among other things, on the Old Man and the Sea with Spencer Tracy and was a friend of Ernest Hemingway. Aren't people interesting? No wonder he has such fun filming things like Kimo and me playing uke on my deck.

That's it for now. In my spare time I'm trying to finish my wood model of the Schooder America (1851), the original winner of the America's Cup. I'll post some pics of that on my other site.
Take care.

Tough job this time

Met with the radiation team at UW yesterday and this time the job is going to be a bit more difficult than my back. One problem is the location, and the other is the size of the area affected. I've diagrammed it here (no photos, please!) to give you an idea, but the melanoma behind my ear has spread pretty extensively and rapidly and now fills the area outlined. Because it's on the surface and just below, I will, unfortnately, have somewhat more noticable side effects, reddness, possible impared hearing, balance maybe, and for sure some hair loss. The docs are going to aim the beams to try to minimize the hair loss and also aim them so they don't affect my mouth much but this is a big area and is going to be uncomfortable and probably unsightly for a while. We'll do two weeks, same dosage and will probably start on Tuesday.

The simulation was interesting. Once they positioned my head just so they warm up this plastic netting and force it over your face and clip it onto the bed of the scanner. They poke it to form it to your head and face and for a while you recall scenes from Alexander Duma's "The Man in the Iron Mask" Whew.... They will cut out eye and mouth holes, and each time I'm scanned it will insure I'm in just the right position. The techs confirmed that quite a few people have to be heavily sedated to got through the process the first time or two, but I did just fine.

Anyway, if I start Tuesday the 25th it will end on the 8th, right after Labor Day. I'm seeing a lot of people over labor day, and if you are one of them be warned I might not look as good as I could have hoped when all these plans were made. Oh well. LOL...I also might have to change from a table of 8 to a table for 1 on my cruise, but I can make that call when I know just how bad it is. Also turns out the Cruise is probably timed right...9 days of three meals a day and room service while I recover, plus all the other on-board amenities will be just what the doc called for.

Zometa done, more radiation coming up

The Zometa went just fine and I'll do it again in about a month. So far no side effects, but they may crop up in the next day or so.

Dr Margolin looked again at the melanoma behind my ear, which is seeming to grow at an aggressive rate. After examining it we agreed that some radiation there is called for, to try to get it under control before it does something nasty like break through the surface (ugh!). The radiation doc was right on it, and I have a 1:00 appt. Friday at the UW to consult with Dr Rockhill again and start blasting the little beasty. Don't know how long this session will be, but probably at least two weeks as with my back. Fortunately I've got almost a month before my cruise, and the rest of my visits and travels are local and short. Since I responded so well from the back radiation we're hopeful this will be successful to the same extent. I'm also experiencing some swelling on the right side of my neck, so it's probably in nodes there now, too, but there really isn't anything to do about that at this point.

This does set back the start of IL-2 to the 6th of October at the earliest because I've got to recover from the radiation and then go thru all the pre-IL2 tests and a full new set of scans to see exactly where else it is. We're in this odd position of needing to do a lot of things, some of which are mutually exclusive, time-wise, but it looks like my choice of trip is just right. It will give me time to fully recover from the radiation and then onward.

I'll post again after I meet with radiology on Friday. Weather is perfect here in Seattle, got a nice bike ride in (back and forth to the pharmacy refilling percoset). Grilling on the deck with friends Friday, so I'm sure keeping busy at least. Hope all of you are having a fun summer so far.

Fun couple of weeks, Zolendronate B tomorrow

Well, since my last post I have been enjoying myself and also enjoying the fact that the radiation does seem to continue to improve my back. Today I'm just taking Tylenol, not any hydrocodone so far, so that is pretty encouraging. Had a marvelous trip to San Diego to my 45th reunion. Amy came with, and we visited friends down and back. Andrea joined us in Fresno and we spend two days in Napa enjoying good food and wine.

I did sign up for an Alaska cruise, on Celebrity. 8 nights up to the Hubbard Glacier and back leaving from Vancouver, B.C. on Sept 13 and returning to Seattle on the 21st. I got a starboard side suite with balcony. What the heck...you only live once.

Tomorrow I go in for the Zolendronate B infusion (Zometa), which will take about an hour. This is supposed to strengthen the bone where the cancer has weakened it. Side effects are supposed to be a bit of flu-like symptoms which are short lived. I consider this a 'dry run' test of side effects and am hoping to be on the less rather than more side. May be an indication of how I'll do with IL-2, but maybe not.

The other thing to accomplish tomorrow is to set the start date for IL-2. Probably Sept 28 or Oct 5. I'm taking all the posted advice (courtesy of Janner's website, which I found thru the Melanoma Patients Info Page) to go over with the doc so we are all on the same page when it starts.

And Happy Birthday to me....I'm 63 today!

Hospice

The radiation continues through Monday the 4th, and seems to be helping reduce my back pain. I keep vacillating about driving the Porsche down to San Diego, but in truth I think the Highlander is a much better choice, even with two drivers. We’ll see. Amy and I will take off Tuesday one way or the other.

Had a good conversation with a Providence Hospital hospice nurse this week who answered a lot of my questions. “But wait”, you say “Isn’t hospice that thing you do right before you die? Isn’t this a bit premature?” And the answer is “Yes”, but there is more to it than that. I met someone in Bend (a hospice volunteer and grief counselor) who said most people misunderstand hospice and wait too long to take advantage of it. So I decided this is a good time to lay the groundwork so I don’t make the same mistake.

It is, admittedly, care you undertake when there are no curative options open to you and life expectancy has dropped to six months or less. For me that’s if the IL-2 doesn’t work, which we’ll probably know about sometime in November. It’ll take a note from Dr. Margolin that says my check-out time is nearing to become eligible, but Providence hospice can supply an impressive amount of support and services. For me the most important is 24 hour a day on-call nursing help and pain management. Plus social services and faith based support that I don’t think I’ll need but could be helpful for the kids. I’m glad I’ve made the contact. It’s good to have Amy, Andrea and friends, but even better to have trained professionals to take part of the load when needed. I’m also glad, once again, for my insurance which will cover it pretty nearly 100% at this point.

In the meantime I’ve got lots of time to have fun, and intend to take advantage of it. Right now I think I’ll go on line and see if there are any cool last minute deals on cruises to Alaska.. Sometimes when you are able to just jump on the boat at the last minute you can get quite a deal……

Still on schedule...

Had a pretty good meeting with my oncologist yesterday and it doesn't look like I have to make any urgent revisions to my timetable. The radiation seems to be working on my back, so that's good. Dr Margolin suggests a treatment of Zometa, an intravenous drug that reduces the complications that can result from bone cancer, so we scheduled that for mid-August, after I get back from San Diego and Ken's and my big birthday party on the 15th. Can't let this little illness get in the way of fun, you know! We discussed my throat issue (Amy and An were there) and it is Dr. Margolin's opinion that it probably won't get any worse, and radiation or surgery won't fix it so we'll just leave it alone. The spots on my neck and under my ear are getting larger and we'll watch them, but won't do anything unless they bother me. At the time of our meeting I was not having any pain, but naturally when I went to lunch right after I felt some chewing so I'll have to keep on top of it. At my radiation appointment I talked with the doc and he suggested they could do some localized radiation there. Since it seems to be working on my back I will keep that option open. So at this point we'll do the Zometa mid-August and then start high dose IL-2 at the end of Sept or beginning of October. Now I just have to schedule fun things to do during the open weeks.

And on the fun issue, Amy might come with me on my trip to SD for the reunion if I drive. Probably not the Porshe, but would be nice to have company and someone to share the drive with. I can always ditch her in SD if I get lucky ;-), she'll understand!!

A couple photos

Just took these...it's 8:30 am and couldn't be more beautuful as the float planes start to come in from up north (the one we'll take is a Cessna, a bit smaller than this) and the rowing clubs are out practicing. Summer in Seattle!! If you click on the images you get a larger view.

First week done

I have to admit that after the first week the whole thing is a little anti-climatic! That's probably a good thing, too. It takes 20 minutes from the time I hop on my bike until I'm laying on the radiation table, and the treatment takes 10 minutes tops from start to finish. I haven't felt a thing, and I guess any results will begin to show up after next week. I've actually noticed a bit longer times between when I need some pain meds, so maybe it's working, or maybe it's just my mind being hopeful.

I'm getting some pretty good swelling in two places on the side of my neck and under my ear, so I'm seeing Dr Margolin on Tuesday to start an action plan. We will probably want to take these out but also need to discuss radiation evaluation, timing of IL-2 and whether the things in my throat need more attention. I'm less fearful of the side effects of radiation now, but the throat thing still worries me a bit. But with so many things to pay attention to it's getting a bit more complicated. The folks at the UW Cancer Center are great, and the weather has been wonderful. Jan and Don are here from FL and go home tomorrow. This afternoon we're taking the 20 minute sight-seeing float plane flight that takes off right in front of my houseboat and tonight we'll go with Rick and Joyce in their boat to have Dungeness crab at Fisherman's Terminal. Much fun.

First treatment done

Well, I had my first radiation today and there was nothing to it! Didn't feel a thing. Even the tattoos they put on me are tiny, so all in all it was very good. Andrea came along and the whole thing took less than an hour, and this session was longer because they did some confirmation x-rays first. The actual radiation session was only about 10 minutes. Now I'm scheduled for a treatment every weekday thru August 3. They will only take 15 minutes or so and I do plan on cycling over each day. Feel fine today, of course, and I'll post again in a few days.

Radiation starts tomorrow

Tomorrow at 8 a.m. I'll get my first treatment. I have to admit I'm kind of nervous but I have hopes that this will produce some positive results. My younger daughter, Andrea, will go with me the first time, and from there on I expect to cycle to and from since the UW hosp is so close. I am having a bit more pain in the back, but meds take care of it. On the good side, the Tour de France is broadcast live at 5:30 every day here, and so far the oxycodone wears off just in time to get me up to enjoy Lance, Alberto and the rest of the Astana crew. The next few days should be very exciting. I think Contador is going to be the final winner, but Lance is doing great and you never can tell in the Alps.

Interesting anecdote regarding pain killers....when I was at the new Cafe with friends last weekend I think I had taken maybe one oxycodone too many and at one point while trying to introduce friends from Portland to my granddaughter forgot or mixed up all their names!!! How embarrassing - you know who you are, thanks for being patient with me! Now I have visitors wear "HI, My Name Is.." badges ;-)

Skin cancer in perspective…….

I know, I just can’t help being a trainer. I’ve received reactions and comments over the years that suggest some misunderstandings about skin cancer, so here is a short lesson that may answer some questions.
More than 1 million cases of non-melanoma skin cancer are diagnosed in the U.S. each year, making it the most common of cancers. Most of these are basal cell (the most common) or squamous cell carcinomas. Both of these cancers are easily treated, rarely spread and rarely cause serious problems when caught early. A quick bit of outpatient surgery and that’s it. And here’s the most important point: they do not turn into melanoma, nor is there evidence that they increase the risk of melanoma. There seems to be a strong association with UV exposure and these cancers, so use your sun screen.
Melanoma, the most dangerous skin cancer, is diagnosed in about 70,000 patients a year, and if caught early and removed has a 99% survival rate after 5 years. Obviously I fell l into the 1%. About 11,500 people die from melanoma each year. They don’t really know what causes it – there is not as strong an association with UV exposure and it is not significantly hereditary (good news for my kids). And, obviously, they don’t have any good ideas about how to treat it, either. Melanoma and renal cell cancers are the big mysteries today.
As a basis for comparison the most common cancer in women is breast cancer, with 192,000 new cases each year and 40,000 deaths. The most common in men is prostate cancer, also with 192,000 new cases but a smaller number of deaths a year, 27,000. Lung cancer has fewer new cases (219,000 men and women) but accounts for more deaths (160,000 combined) than any other cancer, but it’s tied to smoking….none of you still smoke, right?
I drew on the Mayo Clinic and American Cancer Society websites for this info. If you want to know more you can look it up yourself. End of lesson.

Tues Jul 14 - radiation prep

Pretty good news today. There is a little hitch in my throat, but nothing I can't live with, so that's that for the time being. The radiology docs did all the targeting and prep for radiation and the doc says she wants to start first thing next week and be done in two weeks. That means I should be finished by the 31st. Hurray! She also said that while she had to warn me about all the possible awful side effects (growing a 6th finger, being able to hum "Yankee Doodle" from my belly button) I probably would only have some mild fatigue and maybe some other acceptable GI stuff. So I'm very encouraged that the road trip to SD will go on as planned.
The UW hospital is only a couple of miles away so I rode my bike and plan on it every time if I can. Beautiful day here in Seattle, Patty Bentley and Dave Donley coming over to grill steaks on the deck tonight. Fun.

Looks like radiation time.....

July 2009: The CT and MRI's show a couple of new small tumors in my neck area, but the areas of concern now are my spine and the older tumor in my neck. The concern is that the swelling of lymph nodes and thyroid gland may constrict my breathing, an important consideration because IL-2 causes everything in your body to swell up during treatment and chocking to death is not a desirable side effect. So in the last week I've seen the radiation and the ear/nose/throat docs. The ENT doc feels that after careful study I don't have to worry too much about the swelling, and as a matter of fact the catching I'm getting in my throat is probably related to undiagnosed reflux, so that's actually good news. I really didn't want to radiate my throat!

The spine is another story. If the cancer continues to weaken my spine I could end up with a cracked vertebra, so it's a good idea to try to stop the growth of that tumor. I'm finally getting enough pain that it requires oxycodone on a regular basis, so no point in waiting any longer. Tomorrow, Tuesday July 13 I go in for some additional tests on my throat, just to be sure, and also a radiation simulation. When I get out I'll know the schedule. I'm hopeful that we can get it done and I can still make it to my 45th high school reunion in San Diego on August 8. We'll see. I was also hoping to put of IL-2 until October, after the best weather here in Seattle is over, but now I may have to let my body set the schedule. Heck, I've got two or three models still partly built, so it's not like I don't have anything to do. And if I have to fly instead of drive to SD, that's not the worst (tho I really have a bucket list thing about doing the Big Sur in the Porsche!). More tomorrow.

Now that surgery isn't an option

February, 2009: Another scan reveals that in addition to the tumor in my jaw, there are now additional tumors in my spleen, neck and lower spine. At this point I'm still in no pain, but now that surgery isn't an option it's time to look at clinical trials and other options. Plus, Bend is not the best option if I have to do IL-2 or anything else, so moving to Seattle looks like the best idea. Over the next couple of months I apply for a clinical trial in Portland, a promising immunotherapy using Oncovex, a drug derived from herpes-simplex virus and genetically altered to attack melanoma cells instead of creating herpes. Phase one and two studies show much better than average results with few bad side effects, just what I would like to be part of. I have some conversations with Joyce and Rick Miner in Seattle about renting their houseboat, and it looks like I'm on my way to Seattle.
May, 2009: I've completed my move to Seattle and am now settled in the fantastic houseboat on Lake Union. Have had my first visits with Dr. Margolin at the Seattle Cancer Care Alliance (Part of the Fred Hutchinson Cancer Research Center and the University of Washington Hospital).
June, 2009: Can't participate in the Oncovex trial because of the bone tumors. Oh well. It's been 4 months since the last scan, so Dr Margolin schedules CT and MRI scans to get a handle on where I am now and go from there.

Treatment options

Advanced melanoma is extremely difficult to treat. Chemotherapies and radiation treatments that commonly cure other cancers have no effect on melanoma. To get a perspective, go to http://www.centerwatch.com/clinical-trials/listings/studylist.aspx?CatID=196&mp=shade and see the scores of clinical trials currently active. And this doesn't count the trials that have already been completed (failed) or are not accepting new patients. There are also tons of 'alternative medicine' ideas; various combinations of roots and berries that sound good, but have never been proved to do anything at all.

Right now there are two FDA approved treatments for melanoma: interferon and high-dose interleukin 2. Interferon is a year long treatment that makes you feel sick as a dog, might slow the progression for a few months in about 20% of cases but has never resulted in remission or increased life expectancy. I decided to pass, placing the ability to fully enjoy my life as the higher priority. In other words, I'd rather be fishing with friends than be in a hospital bed, especially when the hospital stay will not allow me to live longer.

The other option is high-dose interleukin-2. This is what I am currently considering. It only has positive effects in about 20% of cases, usually in the form of slowed growth or some shrinkage of tumors. BUT - in about 5% of cases there is full remission. Why haven't I done this yet? Because it still doesn't work 95% of the time and is very toxic. The short story is you go into intensive care and they start administering the IL2 every 4 hours up to a max of 12 times. they monitor you carefully and when your body can't tolerate it any more they stop, usually at about 9-11 times. That takes two days and they keep you in the hospital for another 3 until you can go home to recover for another 9 days, then repeat. It's a month in hell, with small chance of positive result, but it is not the only reasonable option so assuming my heart can take it I'll do it.

Timeline from first diagnosis through my time in Bend, OR

September, 2003: First melanoma discovered, a large one on the top of my scalp. It had been hidden by my hair for a long time probably. It was removed by plastic surgeon Dr. Michael Reilly only a week later. Because they had to have 2cm of clear margin around it I ended up with 50 staples across my scalp to sew it up. Heck, I practically got a face lift out of the deal. It was larger than a quarter but mostly less than 1mm thick, so subsequent advice suggested I had a 95% chance of no further recurrence.
August, 2006: Well, so much for the 95% thing. Shortly after Claire and I had decided to break up we discovered a second melanoma, a couple of inches below the first. Surgery at the University of Miami Hospital later shows that this one is over 6mm deep, so I get re-classified to stage IIIc. Naturally I asked the question: how much time do I have? The answer was 75% of stage IIIc patients die within 5 years of diagnosis.
October, 2006: small melanoma discovered and removed from margins of surgery in an outpatient procedure. Start doing Leukine, an immunotherapy injectible, 14 days on and 14 days off. Stay on it for 6 months until the next tumor is found.....
March, 2007: Even though a PET scan (they inject you with a radioactive glucose solution and then scan you. Cancer cell have a more aggressive uptake of the solution so they literally glow in the scan, making it easy to see tumors) had been clear a month prior, an regular exam shows a swollen lymph node in my neck. During surgery they find melanoma infected lymph nodes have completely encircled one of the major neck muscles (sternocleidomastiod) so they remove it, 23 nodes and the left jugular vein. 8 nodes subsequently test positive for metastatic melanoma (which I will refer to as MM from now on).
May 2007: I decide to move to Bend, Oregon. I'd been sales manager for Rado watches in the Southeast for 10 years and in the Caribbean for a year. But I wanted to be nearer my daughters, Amy and Andrea, in Seattle. Claire was settled in her new place. And I could retire from Swatch Group with full insurance coverage. So I retired, sold the house in Hollywood, FL, packed up and moved to Bend, Oregon in September. Turns out my timing was perfect in just about every way, because the economy immediately tanked.
November, 2007: Welcome to Bend, you have to have more surgery. I could feel a bump in my neck on the drive from Miami to Bend, so got a new oncologist right away after I got settled in. Had 9 more lymph nodes removed, one tests positive for MM.
March, 2008: Bend is a really cool place and I'm doing lots of fly fishing. Have to interrupt my fun for more surgery when a PET scan glows. This time it's the parotid gland (the saliva gland) on the left side.
July, 2008: We find and remove a tumor in the old scar tissue from a prior surgery.
November 2008: We reach a turning point at the discovery of a tumor in the joint of my left jaw. Surgery not a reasonable option, so time to reconsider my options......