Monday, June 30, 2008

Oddest thing. Heparin and Warfarin.

Warfarin / coumadin / steroids. What a combo.

I'm supposed to take 1 mg of warfarin every night. It's supposed to thin my blood so my Hickman catheter doesn't clog or block an artery. It's prophylactic. It's on Dr. B.'s procedures list. Dunno if the list is his or the SCCA's. (I suspect the latter.)

Doctor A doesn't like the stuff. He finds it excessive and wasteful. He thinks it's medically unsupported.

Myself? Let me tell you what happens when I take 1 mg every other day - half of Dr. B's recommendation.

I bleed thru my skin.

Why? Because I also clear my Hickman catheter every day with two saline flushes and two heparin flushes. What does heparin do? Prevents clotting!

Thus, two drugs that prevent clotting, some moving and carrying of boxes.... some associated banging on walls and boxes.....

Bruising that makes it look like Ed's an abuser..... and then the spontaneous bleeding thru the skin that leaves blood on my clothes....

Yeah, it sounds like drama. It looks like a cry for help. It's real medically stupid stuff and I'm stopping warfarin completely. If my blood isn't thin enough now, it'll never get thinner.

Friday, June 27, 2008

Dex depths

One of the things I (we) tend to forget about heavy dex loading is the longer term stress it puts on the brain and body. Initial loading produces the roller coaster and the catfish/seagull effect. But the ultimate truth is it just beats the hell out of you over time.

40mg twice a week, Monday and Thursday is problematic for me. The ramping seems to happen off-cycle now and the lingering effects really don't go away. I dosed 40mg yesterday. I felt like crud yesterday and I still do today. I was extremely unpleasant last evening. I'm tired much of the time.

I'm worried about the masquerade dex puts on. I might be feeling bad because the dex is hiding some giant infection I got on the road. No, there are no external symptoms besides feeling lousy. The blood tests show I'm healthy. Can't find a masquerade.

Anyway, I get up, deal with the general misery, and move along. Tylenol is back to being my new best friend.

It's not BAD, it's just not good.

Thursday, June 26, 2008


Hoo Wee! 'Roids again this morning. Followed by a full day of activities.

I felt like junk all day. Slightly loopy, having trouble with my vision. Generally grouchy and trying to keep from being "Tourette-esque". I wasn't always successful.

I went to IKEA for a few hours to get furniture for the Vancouver house. Bedding mostly. We're keeping the stuff we have here, here. I need a bed for after the transplant. A caregiver may need the other bed and we rather doubt a king size will fit in either of the bedrooms up north. Thus, both bedrooms are staying here in Seattle for several months.

So that stuff is loaded in the truck for a move this weekend.

Tomorrow, Ed and I will spend our Friday evening getting a new TV and surround sound system for the new place. We'll also get some wireless office things so again we'll have two complete systems. There's nothing wrong with doing the upgrade..... the system that's installed here is an 8+ year old NT server design that was upgraded to XP..... prehistoric by today's simpler wireless systems.

I also fixed the kitchen faucet today. It's a single handle design and it was dripping when turned off.... just a pain in the rear to listen to and pay for. So I got a repair kit and repaired it. $6.41 including tax. 30 minute job because I was slow and deliberate. I don't know how they build, package, ship and shelve that complete kit with 7 precision components for $6.41 with tax. Anyway, the sink doesn't drip any more.

So, plumbing, IKEA, dinner with our buddy Jay. Long day, high stress for everyone around me.

I love what the steroids do, but I don't love what I do with steroids. I'm not a nice guy. Tomorrow I should be beyond the clanking and doing the fast downhill on the coaster. I expect to improve on the morrow.

Wednesday, June 25, 2008


I just got back from Dr. B. His words: "Amazing". The dexamethasone is working. It's working VERY well.

Quote from the lab work: "Previously identified monoclonal protein component currently not detectable by protein electrophoresis." This means I'm back down to ZERO. We slapped it silly again. Maybe the series of drugs over the last few months just wore it out. Who knows.

Pardon me if I'm elated. It means I can go into the mini allo transplant with as few cancer cells as possible. It means I'll go into the process healthy. That's a bizarre concept. You can't possibly understand how good I feel right now and it's not the dex talking.

Life is SWEET.

Monday, June 23, 2008

Head above water

I told you I'd post the results of the fresh load of Dex. First I want to mention that I did a dose of testosterone yesterday on scrip. I have no precise comment on testosterone's effects, other than feeling more male (if that means anything) and a slightly more sunny outlook on life. I suspect there's some augmentation of the dex. Maybe there's a symbiosis in my little brain.

So the report is that my head is bobbing above the surface today. I got some things done. I had a generally positive day. All in all, I feel better. The coaster is upward bound. Clickety clack. Clickety clack. Whoopee!

Dexamethasone and testosterone. Is there much of a difference between my sensation management methods and one who drinks Jack Daniels for dinner every evening?

I guess technically I do the dex for the curative effects. Maybe that makes me more 'pure' in effort than an alcoholic or junkie who's allowed external chemistry to consume every hour. But the unfortunate truth is that part of me is he. I want to feel good. I expect to feel better once I've swallowed the magic elixirs. I have expectations.

I stay the schedule. I know that unless the schedule is followed, there will be no up and down, no payoff. There would only be a mundane middle ground without the stops and starts. The down is not fun. It's the negative side of life that helps prove I'm alive. The up is enjoyable, but only in comparison to the down or middle ground. It also proves I'm alive.

Mind you, I'm whining.

Dex's Midnight Ride

Yeah, the title is a ripoff of a bad song.

I did 40mg of Dexamethasone this morning as per schedule. I'll try to let you know how it works out later.

Sunday, June 22, 2008


Dexamethasone. What a wonderful way to turn oneself into a mere spark of a human.

The numbness is staggering, quite literally staggering. I wake up with general (but limited) pain everywhere. I can't taste anything. I can't feel much. I deal with it all day long by going numb. I'm distant, vacuous, inactive, protective, defensive. The really sad part is that protecting all these little perimeters make me very highly aggressive on the psychological side. No, I'm not gonna hurt anyone but I'm not behaving well. I go from apathy to rage to 'crying for happy' in milliseconds. It's not cool. Thankfully I think I'm stable in my instability. I know what's going on. So does Ed.

Truth is, the beginning of the new cycles were sort of fun from the junkie side of things. The excitement, the rush, the 'seagull' of it all was enjoyable. The roller coaster ride began again and it was a rush. Now I'm just tired of being slammed against the side of the car. My ribs are more than figuratively sore.

Somehow I need to change my activity levels and motivation. I need to find something to do now. I need something I can measure. I need something creative. I need some progress. My return from the trip turned into a big hole in the road.

I guess I bumped into the Zombie when I pulled the bike into the garage. It's time to remove the contamination.

Thursday, June 19, 2008

The party is over.

I'm back from 16 days on the road. Yesterday was a full day of doctors and chemo, starting with a blood test and then a pamidronate infusion. I guess the timing was perfect because I slept thru the entire process. I needed it.

My blood numbers are pretty normal. I lost a total of 14# on the trip but my chemistry didn't go as crazy as I thought it would. I'm not anemic nor is my white cell count up. I'm still a healthy cancer patient.

If you look at the other blog(s), you'll find that I've been scheduled for a "mini" allogeneic transplant. The actual process begins with a meeting on July 17th. There are meetings, tests, processes, stuff..... and then the theory is that we'll stick a bunch of chemo in me on August 1, 2, and 3. Then they'll irradiate my whole body until I glow in the dark on the 4th. Then they do a small infusion and stick me in the hospital overnight. In the morning they'll send me home and ask me to see them once a day for the next 120 days. I'll be a bit of a prisoner until we find out where the disease will take us.

Ed will be in Vancouver. I'll be in Seattle. Ed's visa hasn't been approved for his return. It's gonna be interesting. Hopefully they'll give me a brief respite on the weekends so I can go visit my husband.

Meanwhile, Ed starts his new job in 11 days and we're not moved yet. Gotta get off my butt and participate.

Oh, the husband part..... we'll be legally married on July 3rd. It's part of the plan. Sorry it's not an official celebration. We're treating it like the purely legal thing it is...... rather like passports and drivers' licences. Everyone knows we're as married as two people can be. We're just going to make it official.

We'll celebrate the wedding and my survival later. Time for progress and change.

Monday, June 02, 2008


As part of my "get on with life" program, the next 16 days will be bloggesd at