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.