Monday, December 31, 2007

Aux fin de 2007

At the end of 2007. December 31. Another year has gone by. And so, a couple of observations without any particular retrospectives.

I'm glad I have Ed. Without him I never would have bothered to fight the fight.

I'm glad modern science has given me 2007. It's been an odd year, but it's been a year and that says something.

I'm thankful for all we still have. I'm even thankful we have family.

But now it's time to look forward into 2008 with some information we got today from my oncologist. We had a consultation with my original SCCA oncologist today, who is sorta "the" multiple myeloma guy. We looked at statistics, options, ideas, and made plans for the future.

See, there are really only two ways out of the current situation. One is to die. The other is to get sick(er). Let me explain.

Option 1) - I can stop treatment completely and just let the disease consume me. Result: Death within a few short months.

Option 2) - I can stop additional procedures and go on a maintenance program of drug cocktails. Result: Death because of the complex cytogenetics involved with my level of disease. Maintenance has a very very low success rate.

Option 3) - Proceed forward with an allogeneic (allo) transplant from a stranger. This gives three potential outcomes.

3A) - Approximately 1/3 of all allo transplant patients get no GVHD (Graft V Host Disease). These same patients also get no GVT (Graft V Tumor) which is the objective. Result: Death as in 1 and 2 above.

3B) - Approximately 1/3 of all allo transplant patients get severe chronic GVHD, resulting in kidney failure, blindness, combinations of issues, or death. Result: Maybe worse than death.

3C) - Finally, another 1/3 of allo transplant patients get mild to moderate chronic GVHD, resulting in desirable GVT to combat the disease, but also resulting in as much as 1-3 years of continual treatment against the effects of GVHD. These treatments almost all include heavy use of steroids and other drugs. In other words, 1-3 years of what I'm going thru right now.

So, the only way I can "get out" of this is thru 3C above. Yup. That's it. Die, wish I was dead, or suffer some more. Funny thing is, "suffer some more" is starting to sound like a good plan. Never mind that there is really only a 33% chance of success thru suffering. Those outcomes aren't options. I don't get to pick which potential outcome I get. I simply get what's dealt to me. That's it. I'd take these odds in the state lottery. They're a little more difficult to accept when it comes to living or dying (or suffering).

One can hope. Mostly, one can fear.

By the way, we opted for the allogeneic transplant today. The oncologist signed the paperwork to begin a formal donor search. When there's only one way out..........

Sunday, December 30, 2007

Prednisone High

These steroids (Prednisone) are freaking me out. I'm on 80 mg per day and they're making me take them early in the morning so I might eventually get some sleep sometime about 2 am the following morning.

Yeah, they're strong.

The difference between Dexamethasone and Prednisone is a matter of crudeness. The Dex is pretty crude, the Pred is pretty smooth. Dex puts an edge on everything. Pred has rounded edges everywhere. Pred also doesn't seem to cause the anger management issues that Dex does. Mental control might be Pred's biggest strength.

But the physical effect is ultimately the same. Irritation of the esophagus. Difficulty eating because of the irritation. Severe heartburn 24/7 with no medical relief allowed (some pills require an acid environment to work, so I can't take any of the modern antacids).

There is also a loss/lack of sleep. A tendency for my brain to want to run my body harder and longer than it should. Suddenly I find myself completely spent and my brain still says "wassa matta, wimp?"

I won't even talk about the physical changes steroids continue to make to my body.

The only thing I'm really worried about is what the downslope of this roller coaster ride will be like. They're leaving me on this 80 mg regimen for 10 days. I have no idea how (or if) they intend to taper me off this junk. If they don't taper, I'll wanna DIE for about 5 days. The crash will be horrible.

Anyway, we're gonna do some socializing over the next couple of days. We're gonna do dinner and/or drinks (don't tell anyone) with our "girlfriends" Pam and Suzie, and then we'll do lunch or dinner with our two "adoptive nephews" Christian and Ethan and their parents Chat and Jose on the 1st. (It's actually Christian's Bday on the 31st and there's a party, but the infectious load at such a gathering might not be good for me. Remember, I have no immunity to childhood diseases any more.)

Oh, and as a side note to the "no immunity" thing, there's a very strong rumor running around that I probably won't have any allergies either. It's even been suggested that I could try to use some drugs that have previously caused anaphylaxis (a potentially deadly allergic reaction). Obviously these experiments would need to be taken under controlled circumstances, but it would be interesting to see what happens. After all, one of my deadly drug allergies is to aspirin and to a lesser degree, all its derivatives (all the way down to NutraSweet which actually only causes a sinus flare-up).

If that turns out to be an interesting and desirable side-effect, I still wouldn't recommend this particular curative process for allergic people. The treatment is far worse than seasonal effects or food sensitivities. "We can cure your allergies, but we have to almost kill you a couple of times for it to work." That doesn't really sound like a good marketing program to me.

Friday, December 28, 2007

Lyrics to Superman (It's not easy) by Five For Fighting

Yeah, I know it's cliche', but if there were ever a song written for me, this is it.

SUPERMAN (It's not easy)

I can’t stand to fly
I’m not that naive
I’m just out to find
The better part of me

I’m more than a bird...i’m more than a plane
More than some pretty face beside a train
It’s not easy to be me

Wish that I could cry
Fall upon my knees
Find a way to lie
About a home I’ll never see

It may sound absurd...but don’t be naive
Even heroes have the right to bleed
I may be disturbed...but won’t you concede
Even heroes have the right to dream
It’s not easy to be me

Up, up and away...away from me
It’s all can all sleep sound tonight
I’m not crazy...or anything...

I can’t stand to fly
I’m not that naive
Men weren’t meant to ride
With clouds between their knees

I’m only a man in a silly red sheet
Digging for kryptonite on this one way street
Only a man in a funny red sheet
Looking for special things inside of me
Inside of me
Inside me
Yeah, inside me
Inside of me

I’m only a man
In a funny red sheet
I’m only a man
Looking for a dream

I’m only a man
In a funny red sheet
And it’s not easy, hmmm, hmmm, hmmm...

Its not easy to be me

Some good info

I got my HLA typing sheet from the SCCA yesterday and plugged my primary HLA numbers into the National Marrow Donor Program (NMDP) Registry.

Matches are done on the first level with 6 markers. A 6 of 6 match is considered a terrific place to start. There are a couple of levels beyond that, but the 6 of 6 is what you're looking for on the first run.

Looks like I have ONE existing umbilical cord sample that's a 6 of 6. This is a good thing because it's already frozen and theoretically available.

On the other hand, I have something like 263 adult prospects who match me 6 of 6.

So we'll take these numbers to the docs and see where we go from here.

Wednesday, December 26, 2007

Graft vs Host Disease (GVHD)

Well, it's official. I have pseudo Graft vs Host Disease (pseudo GVHD). It's supposed to be temporary, but they don't know how long "temporary" really is.

So what is it? When stem cells are put back into your system, the stem cells and new bone marrow cells recognize your own body as a foreign object. In short, my new immune system is trying to kill the "invading stranger cells".

Ok, but here's where it gets a little odd. See, I used my own stem cells. The replacement immune system is MINE. The body is MINE. And yet, my immune system is trying to kill my body.

Now, before you get all freaked out, let me explain. It's not like there's a huge bio-war going on inside me. Basically, this P-GVHD is causing inflamation of my entire GI tract, a dry rash all over my face and neck (and spreading), and general lethargy. I don't want to eat, I certainly don't want to eliminate, and I leave a large white patches of skin cells everywhere I put my head.

More than anything else, it's depressing. I was feeling so good just 30 days ago. Now I feel run-down, worn-out, and the sensation that I wanna barf is perpetual. I don't eat. I sleep sporadically, and because of my hydration schedule, I have to pee every 60-90 minutes.

So now they're gonna put me on more pills. 80 mg of Prednisone (a steroid) plus two other drugs QID. Yippee! The breakfast of champions gets bigger!

So what'd we do Christmas day? We sat around and enjoyed one anothers' company. I made dinner (spiral cut glazed ham, mashies, and corn). Then I forced myself to eat some of it with Ed. No gifts, no parties. Just a nice day with my guy.

Saturday, December 22, 2007


Stoned. STONED!

I'm 52 years old. I grew up in the late 60's, early 70's. I inhaled. (A lot.)

But I've gotta tell ya, I'd NEVER been as stoned as I was yesterday and today.

See, I took the time to advise he anethetist that I've often woken up from procedures, starting with my tonsilectomy when I was 5 to my recend endoscopy this year. I also mentioned that I might have threatened the proctologist's life during the most recent event. And so, in order to defend my sensitivites, my arrest record, and the proctologist's life, I believe she took it upon herself to "take it to the limit" with the dosage. To paraphrase: "That which does not kill me, can only make me more stoned."

Ed has awakened me before from this sort of adventure, but he claims it was considerably more difficult this time. From my standpoint, there was no direct connection between my motor/tactile skills and reality. I could reach for things and they wouldn't be where I was reaching. I would barely touch things and miss them by 1/4 inch, only to try again and miss them by a full inch next time. Trouble was, I wasn't undershooting one time and overshoothing the next.... I was undershooting progressively both times!

Eating dinner at our fave restaurant was really interesing. Ever try sucking on a straw that wasn't in your mouth? Eat a chicken wing that wasn't in your hands? Staggering in and out of a restaurant like a street person?

Anyway, I did the procedure, ate dinner, came home to sleep, and woke up this morning at 11:45 when our neighbor came over to borrow the hand mixer.

"Did I wake you up?"
"I dunno, am I awake? Am I alive?"

So regardless, I've been stumbling around the house for the last 2+ hours. Wonder if I should go for a motorcycle ride. NOT!

BTW - the tastebuds seem to be working semi-normally. No nausea.

Thursday, December 20, 2007


I went to the clinic today. Golly, it's so nice to only need to go twice a week now instead of every day!

We discussed my blood numbers and all of them seem good. I've engrafted, which means my stem cells are turning themselves back into bone marrow. Bingo, I dodged a (very rare) bullet. Kidney function is good too. Judging by the printouts, I'm as healthy as I could be at only 20 days out.

We also got the news about my brother's compatibility for transplant. Turns out he's only a 4:6 match at the preliminary level. This means he's not really suitable as a transplant donor. Our next move is to do a worldwide search through the donor database to see how many hits come back. (I'm apparently gonna be a tough match.)

Ed has decided to put himself in the worldwide database. I applaud his decision. Wouldn't it be strange if he turned out to be my match?

Food has been a problem of late. I don't wanna eat because everything tastes horrible. (HORRIBLE!) So I spent some time talking to the nutritionist this afternoon and we might have stumbled upon a solution. She mentioned that tart/sour flavors are often quite palatable by transplant patients, so I tried something when I got home. Boiled jumbo shrimp with lemon and soy sauce. It didn't exactly taste as it should have, but it tasted pretty decent. Looks like I might have a solution to my palate problem. I can do fishsticks with the same flavorings, as well as Filipino Adobo (chicken with soy sauce and vinegar + spices). I also managed to drink a 20 oz Mountain Dew because the lemon/orange flavor seemed to come out more than usual. So hooray for the nutritionist who mentioned the tart/sour link!

Tomorrow I have an endoscopy procedure at about noon. Seems they wanna look deep inside me to see if my loss of appetite has roots in illness, or if it's simply a reaction to the chemo. In any case, I have to be NPO (nothing by mouth) after midnight tonite so they can drop a scope into places I don't wanna discuss. I hear they're planning to knock me out, which will be a requirement if they're gonna do what I think they wanna do.

If there's no illness (viral or otherwise) that's affecting my appetite, they're reportedly going to give me large doses of steroids (again) to reduce the inflamation of my GI tract. This should make eating more desirable, which will be something I'll enjoy.

Anyway, I'll keep you posted.

Tuesday, December 18, 2007

Day 18 - New realities.

Either I died yesterday or I didn't post. Hopefully this post will clue you in on the answer to the question.

Eating is a major issue. MAJOR. I'm nauseous all the time, but I don't feel like being doped up by the anti-emetics. Here's the big problem though....... everything tastes strange, and I mean strange!

The thought of chocolate makes me turn green. Water is incredibly bitter. For comparison, take the most bitter pill in your medicine cabinet and suck on it for a while. Gatorade and Coke are acceptable. Tomato based foods are acceptable. Don't think for a minute that they taste like Gatorade, Coke or tomato based foods. They simply taste acceptable enough that I won't vomit them back up.

Lunch today consisted of one scrambled egg made with spaghetti sauce. Yeah, odd but acceptable. Dinner last night was one deboned chicken thigh cooked in Pace picante sauce. Neither of them tasted like they should have tasted, but I kept them down.

Shaving is interesting too. Basically all I have to do is rub my face/head and the hair will fall out. Only takes a couple of strokes. Rub, rub, gone. I wish it was this easy all the time.

So, what's my world like?
1) Get out of bed.
2) Take my "breakfast of champions" handfull of pills.
3) Connect myself to an antibiotic infusion that takes an hour to infuse.
4) Connect myself to a hydration infusion that takes 5.5 hours.
5) Take my afternoon pills.
6) Take my evening pills.
7) Wait 'til it's been 12 hours since starting #3 above and repeat #3.
8) Write down everything I eat or drink in the interim.

Now obviously this doesn't take into account little things like showering and changing my central line dressing. Nor does it figure the flushing of the central line in between infusions, etc. Thank goodness they've reduced my clinic schedule to twice a week now.

All this just to stay alive. Looking forward to getting this over with so I can live.


Sunday, December 16, 2007

Escape from Alcatraz

I'm out. I'm at home. I feel like a huge load is off my shoulders. Ed and I were adding it up and it seems I've spent 26 days in the hospital in 2007. Hopefully I can stay healthy enough for the next two weeks that I don't add to the total.


Odd. Almost exactly 15 months ago, I wrote the first entry into this blog.

Saturday, December 15, 2007

Day 15 - Hospital day 11

Here's the deal. I had a rather heavy flare-up of my gout last night (this morning) at about 3am. I begged for a dose of steroids and the docs didn't quite get it. They wanted to treat the pain and I wanted to make the damned things go away. I know a dose of 'roids would dissolve the urea crystal(s) and make the problem go away. All they wanted to do was make sure I was doped up enough to not care.

I won.

Now, some 18 hours later, the gout is virtually gone. I don't have any significant pain, and I know it'll be better in the morning.

So why am I still here in the hospital? They kept me here because of the gout. They wanted to "make sure" I didn't fall down. (I honesty think it was just an excuse to keep me the extra day they originally wanted anyway.)

Regardless, I'm OUT OF HERE TOMORROW, Sunday, December 16, 2007. (If I'm not, I've either got a fever or I'll be in jail for kicking booty in a hospital.)


Friday, December 14, 2007

Day 14 - Hospital day 10

Looks like I'll be out in 11. We're targeting for my release tomorrow.

Appetite is OK, but things taste and smell pretty odd, so that's sorta preventing me from getting back on the chuck-wagon. (Bad pun, sorry.)

There is fur EVERYWHERE. I'm worse than a shedding dog. I just hope kharma works and this stuff manages to make some cat sneeze all day.

Gonna start figuring out what to do for Christmas dinner. 11 days away!

Wednesday, December 12, 2007

Hair today, gone tomorrow

I sorta forgot to mention that hair is falling off my body in huge clumps. All kinds of hair. All densities. All colors. All locations.

Day 12 - Hospital day 8 of 10?

Fever has broken. Feeling better overall, even though I can bleed on demand from any orifice I choose. Might not get out in 10 days. May need 12-14.

Tuesday, December 11, 2007

Day 11 - Hospital day 7 of 10?

It's about 3:45 in the morning. I have a bit of energy. Maybe I'm getting better. Maybe the antibiotics are working. The tylenol is DEFINITELY working.

Don't get me wrong, I don't wanna do any salsa dancing.

Monday, December 10, 2007

Day 6 of 10?

Serious fever (102.9)

Sunday, December 09, 2007

Day 5 of 10?

Still bored out of my mind. I can barely talk because of the mucositis. Heck, my lips are so dry I can't even use a straw.

Let's hope that I start to get stronger within the next 3 days.

Friday, December 07, 2007

Day 3 of 10?

Bored out of my mind. I have to save all my pee and poo so they can measure it. Still haven't eaten since Nov 28th.

Throwing up at the mere whisper of movement. Anti-barf pills knock me out.

Thursday, December 06, 2007

Hospital day two

Every hour in a hospital takes 2 hours to pass. The beds SUCK.

Wednesday, December 05, 2007

UW Hospital

I checked into the University of Washington Hospital this morning. Vomiting blood, difficulty swallowing, no energy, general malaise. Room 7262. Don't send anything. Cancer wards are pretty secure. No food, no plants, no nothing.

Tuesday, December 04, 2007

Day 04

I'm officially neutropenic again. I have no immune system. We've reached an objective.

The mucositis is really starting to be a drag. It's hard to drink. Hard to take my pills. Hard to eat. The pain's not unbearable, but it's getting worse so I'm packing a hospital kit later today with the idea that I'll be headed there in a day or two.

The plumbers came by about the floor drains. They say there's really nothing they can do owing to the original design and implementation of the drainage field some 49 years ago. I believe them. They passed up a $500 ticket because they didn't think it'd be worth my money or their time. That's a sign of a good businessman in my opinion. Tell you the truth. Tell you how much it will cost to 'take a stab at it'. Tell you about the basic construction of what you're dealing with. Let you make the decision. They even offered an opinion on my plumbing drain system for the upstairs bathroom. Seems I went a bit overboard with the pipe. Apparently I used pipe that was too good and it could have been a smaller diameter. Better this way than 'too small and too cheap'.

One of Ed's lab friends is downstairs working on the Beemer. He's proven my fears - that Ed 'hydrauliced' the motor (as if hydraulic was a verb with a past tense.) Anyway, we'll have a more detailed analysis later.

Meanwhile, I'm tired and wanna go to sleep.

Yesterday SUCKED!

Ok, we'll ignore the part about me feeling lousy. We'll pretend I was 100% healthy and feeling good. Yesterday still sucked.

We awoke to an inch and a half (38mm) of water on the ground floor of the house. That might not sound too bad, but that's a little deeper than the carpeting downstairs. It'll all have to come out.

Right now I'm waiting for the plumber who is at least 1.5 hours late. The flooding was caused by some floor drains that "didn't". Seems all the rain went under the back door instead of down the piping to the lake.

And then...... and then.....

And then Ed decided to drive his car to work. Trouble was, he sorta forgot to pay attention to the 18 inches of water across the road about a mile from the house.

Just FYI, a BMW 740i has an air pickup right behind the passenger side headlight. Apparently that headlight went under water at some point in Ed's excursion. Yup. The motor sucked pure ditch water right into the intake.

He locked the motor hydraulically. Water is not compressible. For those of you without a ton of mechanical savvy, he "broke it big time".

Of course, there is no insurance that covers "I drove it into a foot and a half of water".

Any of you want to buy a BMW 740i Sedan in good shape other than the motor? (I was actually looking forward to making the car reach 'vintage' status in concours condition, but alas....).

So that was yesterday.

Monday, December 03, 2007

Day 03

Miserable weather. Wet, wet, and more wet. Downstairs had an inch of standing water.

Went to the SCCA, did the usual tests and talked to the usual suspects. No significant change.

Sunday, December 02, 2007

Day 02

Slushy weather.

Slush falling from the sky, staying slush on the ground. Yeah, I wanna go traipsing off to the doctor in weather like this. It's cold, wet, and I'm feeling pukey.

Don't misunderstand. I'm not feeling 'bad'...... I'm feeling pukey. I guess pukey is sorta bad.

I got up, took my shower, jumped in the pickup and slushed my way to the SCCA. There was no line for the blood draw so that took about 7 microseconds. Ed and I dragged ourselves upstairs for the checkup and waited about 10 minutes for a room.

Once in the room, my breakfast reappeared. Fortunately it had only consisted of my morning pills and water. It appeared several times until it was no longer able to appear.

Pills don't taste very good when you put them in your mouth. They taste even worse on the return trip.

Regardless, much of our visit was spent on prevention of this sort of misadventure. I now have 4 different types of anti-nausea pills. I take a different type every 2 hours. I'm only conscious long enough to pee and take a fresh dose of pills.

"Say 'Good Night', Gracie!"
"Good night, Gracie!"

Saturday, December 01, 2007


I smell like DMSO today. It's the preservative (antifreeze) that stem cells are stored in before transfusion. It stinks. I stink.

Some people say it smells like creamed corn. Some people say it smells like garlic. Some people say it smells like DMSO. I'm in the latter camp. It's just sort of a chemical-esque fragrance with subtle hints of creamed corn and garlic. "Eau do DMSO". Or maybe "DMS Eau".

I can see the marketing campaign now:

"Smell like the stereotypical Frenchman with DMS Eau."
"Increase your intrapersonal space with DMS Eau."

I'm thinking we can put these ads on the sides of busses. Nothing like a little waft of diesel to go along with your DMS Eau!

Anyway, the other side of the DMSO thing is that it makes my sense of smell COMPLETELY upside-down. Ed made pancakes this morning. I thought he was burning truck tires in the kitchen.

Basically everything stinks, including me. My nose is having a wonderful day.