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.