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……