Maintenance Fees

Hey everybody, it's currently 2:18am on my swatch watch, can't sleep. Sometimes I just wake up at this hour and can't get back to sleep. It's the perfect excuse to abuse my pain medication, because hey, I can't exactly take a sleeping pill right now or I won't be going to work in the morning. A good 'ol oxycodone kicks in in about 30 minutes, lasts about an hour and a half, I wake up refreshed :)

They tried to make me go to rehab, but I said "No, no, no..."

Thanks to everyone who made it out to my birthday party on Saturday, the evening was a huge smashing success. Thanks to everyone who contributed to the planning and the finances and the organization, I could definitely not have pulled off something so special without the help of all those people who love me.

One theme that comes up a lot in my psychologist  sessions is my inability to ask for help, then my inability to accept help. This party was proof positive that asking for and receiving help makes things so very much more fun and easy, just the way life is supposed to be.

In other birthday related news, I made out pretty well financially in all the cards and stuff (once again, thanks to everyone for their contributions, VERY needed), all of that is going to go into motorcycle maintenance fees and repairs. Lynnwood Harley (where I take my bike) has a VIP service you can buy for $2000 that covers all maintenance costs for two years. At about an average of $500 per tune-up, and considering how many miles I put on (30,000 in just 18 months) and the tune-ups are every 5000 miles, I might try and buy a package like that. My first thought was that I might not last long enough to make something like that worth it, but the more I think about it, the more I think I will at least get $2000 worth of maintenance done before...well, you know. Then, when I take my bike in for a tune up, I'll only have to be concerned with repairs, like breaks and belts and stuff the factory warranty doesn't cover. I made enough in birthday contributions to cover about half of the VIP service package, I'm thinking about trying to get creative about the other half to make this work. I might go into a little debt for it, but I think it might be worth it in the long run.

Anyway, just a few thoughts, sorry this is so long. Its 2:32 now, no oxycodone feeling yet...

Western Medicine

Well, the big party is this Saturday. I'm sure excited! Should be a really good time. Jamie even secured a DJ I saw randomly at a vegan family pizza restaurant in Eugene (of all places to find a kick-ass DJ).

My knee has almost fully recovered. Strange, in a way, how my doctor was able, through his own experience and knowledge, to asses the situation (no x-rays or anything), he just looked at it and knew exactly what was going on in there. Was it simply a matter of going on anti inflammatories? Couldn't possibly be because I was already taking a quite powerful anti inflammatory called Celebrex. He switched me to a more powerful one and the knee cleared up just like I soaked it in a whole vat of magic crystals. Those anti inflammatories worked so well, you'd have thought they came off the shelf of some ancient Chinese apothecary. But everyone is shocked and surprised that it was actually (drum roll please) modern WESTERN medicine that took me from absolutely crippled (completely dependent on a cane to even walk safely down the hallway of my apartment) to walking with no limp at all in just a few short days. It worked like prayer is alleged to.

No one will remember this though. They will only remember the anecdotes and stories of people they don't know, mostly internet accounts of ancient Chinese herbs working to cure cancer. I'm going to use the term "ancient Chinese herbs" as a blanket term to describe any alternative therapy, or anything outside of western medicine. I know it's not an accurate way to lump all such therapies, but I'm going to do it anyway.

Western medicine is where it's at. If my knee issues aren't proof that there is at least some teeth to the claim that western medicine is where it's at, then we're all hopeless.

Off the Cane

So the anti inflammatories are working splendidly, just as advertised. I'm down to 2 per day so the burning gut isn't quite so bad. It also gives me a nice little pep, which, if I'm not careful, will disallow me to sleep some nights. I'm even off the cane with barely a limp.

Anyway, I was looking into Ipilimumab (my "plan b" drug), side effects and what not. Looks like it can cause a lot of intestinal issues (like colitis) and other auto-immune manifestations. In some cases, it caused hepatitis, liver failure and death, so hopefully that doesn't happen. The drug is effective at stopping tumor growth, but not at shrinking tumor size. It's another band aid, just like my current drug. It's not meant to throw cancer into remission, just prolong survival by an average of 4 months. That's right, 4 extra months (on average).  The drug is only effective in 20% of patients and may take months to even become effective. So once you start, you have a giant time window where no treatment is actually taking place, and the cancer can do what it wants. But 6 months down the road when it finally starts to kick in, only then can it be known if the drug is even working.

Hope everyone is having a nice weekend.

More Bitching. Just what everyone wants to read :(

Well, had another appointment with Dr. T on tuesday. No luck on pain meds. He did prescribe some very powerful anti inflammatories which are fucking up my stomach and lower intestines pretty well and good, but I guess I'll just trade one pain for another (again) Waaaaahhhhhh. I'm such a fucking pussy. Whatever.

 

I'm more tired of dealing with this then anyone can possibly imagine, including my family, but I guess that stands to reason becasue they see me the least. I don't mean to be rude, but I'm just feeling a huge lack of understanding. Whatever, I'll just keep plugging away, I guess. I'm going to be limping and vomiting into the grave, but at least I'll be here present on the Earth's surface, right? So I guess that's the point? I think I've lost track of the point ten thousand blood draws ago.

 

Sorry about the tone of this posting, I'm just frustrated and tired and misunderstood. I'm being slowly ground to a nub. But at least I'm here.

 

Right?

Willn't

Well, the pain in my knee hasn't gotten any better. The other day I actually went out and got myself a cane, thought it would be the safe thing to do, I don't want to be falling down any stairs, or falling down by myself. It's a little embarassing cruising around with a fucking cain, but I have to just let another little piece of pride go. Hopefully Dr. T will prescribe me some more powerful pain killers too, like medicinal heroin or something might do the trick.

Why isn't "won't" spelled "willn't"

Pain Pills

So, they finally called me back at 5:30 yesterday. Because of the nature of the prescription (pain pills) they couldn't phone it in to the Walgreens, so I had to run down to the SCCA to pick it up. So that's solved. Wasn't worth all the frustration I put into it...

One other thing I feel the need to address is alternative therapies. I don't really want to be rude. Seriously, it's not my intention to be rude, but when someone comes up to me and says "You should at least try this (alternative treatment X), I mean what have you got to loose, right?" I'm going to answer with "No thanks" and sound like a jerk. These are things that people really believe in. I think to refuse to at least try the suggested therapy, I come across as a close minded fool. So I'm just going to ask that no one try and turn me on to any alternative therapies.

The thing is, I really believe in Western medicine. For some reason that has become unfashionable lately. I would be willing to bet that anyone in my situation would have an oncologist and be taking chemo therapy, not turning to alternative therapies, no matter how many ancient Chinese people used it to cure melanoma.

So I'm going to sound like a jerk just this once and get it all out of the way. I'm not interested in alternative therapies. If you bring it up with me, please expect eye rolling. I'm sorry.

Frustration and Pain

Well, my brief respite from my treatments is almost done. I'm going to start back with Wednesday morning's dosage. I'm also going to decrease it to three pills twice daily instead of four pills twice daily. This has not been the restful, strength restoring vacation from pain and illness I thought it would be. My right knee is bloated and hurts to even bend it. I'm almost out of the pain medication that Dr. T gave me for my foot pain (which subsided almost imeadtaely upon ceasing the medication) cause I've been using it to combat these knee and ankle issues. I've been trying to get ahold of my nurses at the SCCA to see if they can contact Dr. T and have him phone a refill in to my neighborhood Walgreens, but all I get is the voice mail line. I've probably called twenty times today. I left one message this morning, then another with much more urgency this afternoon. I tried going to Walgreens to see if the prescription was waiting for me, they had not heard from my doctor at all. I can't believe I haven't had a call back or anything at all from the SCCA. I'm quite pissed about it actually.

Anyway, this just continues the pattern of frustration and pain. Don't get cancer.

Quality Vs. Quantity

Well, I'm into my second week off the meds. For some reason, it feels like I'm going through another bout of joint pain. Like my body is responding to the drug exiting my body. It's a little different this time, it feels like there's fluid retention in my knees and ankles. When I was crawling out of the shower yesterday, I noticed that there was a little was a little pocket of fluid on the outside of my knee. Still taking the celebrex, so hopefully that's making a dent.

In other news, plans for my birthday are starting to materialize. I sent out as many invitations as I had contact information, but let it go without saying that everyone is invited. If you didn't receive an invitation, take no offense, it's only my lack of organization to blame. It will be Saturday July 9th and the Broadway Bar and Grill, probably starting at 8:30.

I'm still working through the "quantity of life vs. quality of life" question. I have to say that I'm leaning toward the quality side...

4 Days

Well, it's been 4 days with no meds, and I have to say, the side effects are relenting sooner then I thought. It feels really, really good. I might start back up this wednesday, but I might just wait one more week. I'll see how I feel.

I remember when I was little, Justin and I used to mimic our dad as he did his job as a roofer. It went something like this: "Tap tap BOOM. Tap tap BOOM. Tap tap BOOM." This is the sound of him setting a nail, then driving it in with one strike. Every time. He had this weird neck thing that would hold a row of nails and he would just machine through those things. It was impressive to watch. Tap tap BOOM. Tap tap BOOM. Tap tap BOOM. His hands were hard and calloused. I remember thinking his hands were that way because he was in the army, but it was because he was a hard worker. Well, probably both, but I would bet the farm all that hammer swinging had a very substantial stake in how his hands became that way. I wanted my hands to be hard like that. Perhaps I should've joined the army? Maybe I should just have my palms replaced with tree bark.

Tough Questions

Welp, I just returned from one of my "results show" appointments. I had another CT scan yesterday afternoon, and an appointment with the good Dr. John Thompson to discuss the results. No new tumor growth or spread, things continue to hold steady.

However, my side effects are really starting to become an issue. Mainly my feet. Have you ever been walking around, perhaps in the dark, wearing socks and you accidently step on an extension chord (especially on linoleum, hard woods, tile, etc...) in just the right way to really, really hurt? My feet feel like that all the time. It's kind of like low to mid level annoyance interrupted by moments of eye clinching pain. The kind of pain that will make you sweat. It doesn't last, I just have to wait a moment or two. Its usually when I step right on a sore spot. It's impossible to avoid.

Also the sun sensitivity could almost be more accurately described as sun allergy. That burn I mentioned in the last post is still in full effect. It looks......nasty.

Because of all this, I (with the recommendation of Dr. Thompson) decided to take a break from my meds, perhaps a week, maybe longer, then start back at a lower dose. He's suggested this to me before, like when I had that scorching case of pink eye, but I refused. I'm just tired. Tired of all this constant fatigue and pain.

I have been asking myself some VERY difficult questions (this is going to get pretty honest, maybe a little upsetting. Just a warning). Knowing how this situation will almost certainly end up (I know that "almost certainly" isn't "certainly", but I don't have any illusions about what I'm up against), and taking into account how wonderful I felt when I stopped taking Interferon a couple summers ago, after the seizure, I'm starting to think about the option of stopping my medication altogether, feeling strong and healthy like a normal 33 (almost 34) year old until the inevitable, (this is turning into a really long run-on sentence), rather then spend the next couple years at about a 60%. Am I being weak? Should I just suck it up for the sake of the added time? It's almost as though I want to quantify life, what is worth more, a year of strength and vitality, or two years of chemo therapy? I wish I could just put a number on it. Ask yourself "self, if I was in Josh's shoes (no kids, no dependents) what decision would I make?" and get back to me.