Friday, January 30, 2009

Can they make it more difficult?

I had a blood test at 9:30 this morning. At 4pm I got a call.

"We need to give you two units of whole blood tomorrow after a type and cross. How about if we see you at about 8:30 in the morning?" Yup, Saturday at 8:30.

No, it wasn't quite that simple, and it wasn't that trite, but the net result was the same.

I get two days a week with Ed and they're taking one. Blood test, T&C, wait for the delivery, transfuse over 4 hours. If I can jam it into one day tomorrow, maybe they won't eat into our Sunday.

Feel free to add a closing line of your own. I'm going to put my fingers away for a few hours.

Wednesday, January 28, 2009

I agree.

tim's wife wrote:

Here's the thing about statistics. I know 2 men whose wives and families were told they had a 0% chance of survival. I don't know how a doctor can say that unless the patient is already gone or the doctor's first name is "almighty" and he's got a hippy looking guy standing next to him in a loin cloth with holes in his hands and feet. Anyway, they are both fine today.
The morals of this story.... statistics are a waste, doctors shouldn't play God, and don't get pancreatitis(what they both had.)

I ultimately agree with you on the statistical issues. I use them mostly as a means of measuring risk, not results. I think lots of people take mathematics as an absolute, not as the vague indicator it most often represents. Pure numbers show simple values. Percentages only suggest potential trends for a specific outcome. Mathematics is the study of history.

There is no future in numbers. Feel free to quote me.

However, speaking both mathematically and historically, LIFE has had a 100% death rate over a lifetime. The trick is for individuals to avoid hitting the jackpot in a foreseeable time period. Thus, our attention to risk and statistics.

When I actively raced motorcycles, my mortality risk was below 1% for that activity. Now my mortality risk is above 30% from uncontrolled outside infections.

Suddenly, an 8 year old is MANY times more dangerous to me than Pacific Raceways' turn one at 157 miles an hour. And yes, I've done that on two wheels, but I won't hug my nephews next weekend. The statistical risk is simply too high.

Life's strange that way. Statistics prove it.

Tuesday, January 27, 2009


Based on my earlier post, I feel I made some good progress with Dr. D. today.

Unfortunately I also got a realistic perspective of my reality.

My spontaneous bleeding is no big deal. It's drug induced.

My drug levels are being monitored, at least in part, by observation of muscular tremors.

Blood numbers aren't going up, but they stopped going down so rapidly.

I'm still tremendously immunocompromised.

The statistical mortality rate for people in my situation is still rather high.

Meanwhile, I'm looking in the mirror and trying to see Steve Austin.

There you have it.

The optimist.

Remember Doctor D, the doctor I had the horrible fight with? She and I had a very interesting conversation today.

Essentially, we've both accepted that we're different. We seem to have accepted the huge problem with our communications. We didn't address it directly, but I'm suspecting our true issue is a simple matter of methods.

She's BLUNT. She's factual. I'm BLUNT. I try to be factual. The disconnect seems to be that her world is black and white. Mine is 24 bit greyscale. We're both equally irritating but we don't see life the same way at all.

She doesn't joke. I joke all the time. She wouldn't reveal half of what's written in this blog. I would never write the the research paper she would put in its place.

Neither of us is wrong. (Well, maybe both of us are, who knows.)

I'll give you an example of a small part of the exchange today. It happened as we were walking out of the exam room.

She said, "You look good."
I responded laughingly and with obviously feigned vanity, "I always look good."
She responded, "Well, I mean you look better than you did last time I saw you."

Yeah, re-read that. I don't think she was trying to be insulting. I think she was just considering her words against her perceived professional standards.

She is not a light-hearted woman. It's OK. I understand that now. I'll deal with it. She knows I'm not as serious as she. She's dealing with it.

But the important part is that we communicated positively today. I got her vision of the future. I got facts and results and plans.

I saw into her crystal ball and it was good.

She envisions a maintenance program. She has objectives and potential solutions for every issue I'm going through right now. She's being MY DOCTOR.

So believe it or not, I don't feel like a hot potato any longer. I feel like a patient. It's was reassuring, reaffirming, refreshing.

I never would have expected the source.

Monday, January 26, 2009

Current events.

I seldom comment on current events, but this really moved me:

Texas Judge gives 7 year old right to decide custody.

Dallas, TX, December 31, 2008

A seven year old boy was at the center of a county courtroom drama yesterday when he challenged a court ruling over who should have custody of him. The boy had a history of being beaten by his parents and the judge initially awarded custody to his aunt, in keeping with child custody law and regulation requiring that family unity be maintained to the highest degree possible.

The boy surprised the court when he proclaimed that his aunt beat him more than his parents and he adamantly refused to live with her. When the judge then suggested that he live with his grandparents, the boy cried and said that they also beat him. After considering the remainder of the immediate family and learning that domestic violence was apparently a way of life among them, the judge took the unprecedented step of allowing the boy to propose who should have custody of him.

After two recesses to check legal references and confer with the child welfare officials, the judge granted temporary custody to the Dallas Cowboys, whom the boy firmly believes are not capable of beating anyone.


I've had blood tests every day since I got out of the hospital. They called me today to tell me I'd 'graduated' and that I only needed blood tests on Tu, Fr, and Su.

Big deal. That still ties me down in Seattle. I guess it's not a BIG deal, because Ed has to be in Ottawa in two weeks. I'll see him this weekend, but not the next.

Of course, if I can get them to break the shackles, I could go to Ottawa with him for the weekend....... but do I wanna? Ottawa is COLD in Feb. Ed will be in seminars all day. Gotta think this one out. Look at the expense v the reward.

But now to the gore. I'm still not making blood and what's there is seeping out of me like I was a 100 year old bota bag.

I can easily fill (and I mean fill) a paper towel with blood just by blowing my nose. It's easy to do on command.

I bruise in places I haven't even bumped. The phlebotomist asked me today what I'd done to my hand. I had no idea I'd done anything. Sure as heck, the bruise is the size of my entire thumb.

I've got petechiae all over my arms and legs. Think "nude house painter".

My feet and ankles are bruising because of hydraulic pressure and edema.

There's blood on the sheets and pillow cases. (They're good sheets, so don't tell Ed.)

I guess this means I'm making blood..... after all, I'm apparently overflowing. Gotta talk to the team tomorrow. I feel slightly better, but I look like death.

Confused...... what's the objective here again?

Wednesday, January 21, 2009


I'm home again. In fact, I got home last night (Tuesday) about 8:30 or 9 pm. P and S drove me home and then we accidentally popped the cork on a bottle of Gewurtztraminer.

Actually, the popping was deliberate. The dessication was indeliberate but absolute. S was the designated driver and she's good about it. P enjoyed the kind of stress relief a Type A businesswoman sometimes needs. I participated in some physiological decompression. We had a good talk, shared some thoughts, and then called it a night.

I got up this morning for blood tests and doctor visits. My schedule was three appointments and a trip to the post office. I felt pretty good all day but my creatinine level was moderately high.

Duh, I wonder why.

I have more tests in the morning and I've been well behaved all day. We'll see what the levels show. No man is an island and hydrology is an imprecise science.

Yeah, that was kinda obfuscated.

Monday, January 19, 2009

The canary in the cage.

A couple of readers have asked about the treatment I've been getting. The video shows what's going on, but it's not a logical course of treatment for MM.

First, I should apologize for my rude behavior at the end of the video. I was feeling a bit irreverent. Sometimes I'm a bad boy. I'm not always politically correct. Sometimes I'm 53 going on 13.

But now to the explanation.

You saw a mouthpiece covering my prodigious beak. The mouthpiece was attached to a plastic hose, and the hose was attached to a SPAG (Small Particle Aerosol Generator).

Inside the SPAG is an antiviral drug called Ribavirin. A very very very fine powdered crystalline aerosol is created for me to breathe over a 2 hour period, three times a day. I breathe it directly through the mouthpiece.

The surrounding tent is designed to capture, control, and filter the particulate matter that escapes when I exhale. That's the 'jet engine' you heard in the video. The video has pretty accurate sound, and it's identical to the engine noises of a 727 or MD80 in ground operation. Thus, the comment about 'bird strikes'.

The filter system draws air past my face and rearward through the big blue filter system you can see behind me.

Most of the room is covered with sheets so that the crystals don't go everywhere. They're seriously abrasive. They irritate eyes, membranes, and skin. The technicians leave the room as soon as they turn the SPAG on. You can see the headwear they use so that they don't have to breathe what I breathe.

So what's the Ribavirin do? It kills/disables/deactivates the viruses I have. It's working. My chest cold/bronchitis/whatever is finally going away.


Things are going well here. I'm getting better and rumor has it that I'll be escaping on Wednesday morning after a late Tuesday treatment.

It's been boring, but a couple of amazing things have happened this week too.

I've been spending the last few days trying to figure out which of my anonymous readers dropped a thoughtful little gift off at the front desk.

You'll notice that the motorcycle has a "white tiger" motif. Not everyone knows me as 2WheelTiger. Not many people know I have a small collection of toy motorcycles at home. Not many people knew exactly where to find me this past week.

The gift came with a card from "Anonymous Blog Poster". The text on the card suited my sense of humor perfectly. "....laughter is the best medicine. Unless you have cancer. Then you need chemo."

Similarly, I know there are people out there who really care about me. S and P actually bought and transported Kentucky Fried Chicken to me for dinner one night. They're devout and practicing vegetarians, but they called Ed in Canada and asked if there was anything special I might like. Ed was candid.

I know it was a HUGE deal for them to do what they did. It became a huge deal for me too. People just don't do things like that unless you're pretty high on their list. Believe me, that'll be one of the most memorable things anyone has ever done for me.

So between the very thoughtful toy motorcycle, the controversial KFC meal, and the constant commentary on here, I realize I'm a very lucky man.

Saturday, January 17, 2009

Ground Control to Major Tom.

You won't understand when I say "Hopefully we won't have a bird strike."

This happens every 8 hours for 2 hours at a time.

Thursday, January 15, 2009

Day two at the hospital


I'm just sitting here being infused, hydrated, drugged, bored. TV is no release. Food is no release.

I'm getting better.

Wednesday, January 14, 2009

Guess where I am?

I'm in the hospital for the next ten days.

I have CMV, RSV, and corona virus. They yanked me in here stat to treat infections. I get 3 tentings a day for 2 hours each. They'll go on for 10 days.

Friday, January 09, 2009

Self awareness.

I'm burned out. I'm tired of playing the game. I'm not a fan of the daily grind.

It's the same stuff every day. Get up, take pills, hydrate, take pills, go to the SCCA, take pills, try to suffer as little discomfort as possible, take pills, go to bed alone in an enormous empty house.

Rinse, repeat.

There is nothing upbeat. Nothing positive. Nothing invigorating.
However, there's nothing really negative, downbeat, debilitating.
It's just DULL. Stagnant. Stale.

My excitement for the week? The SCCA prescribed 90Mg of Prednisone per day and then filled my prescription with 50Mg pills. Getting them to arrive at the intersection of Mathematics Boulevard and Practicality Lane was purposeful.

As far as new info is concerned, I've been shuffled from the transplant team to my regular oncologist, then back to the transplant team to the Long Term Followup Unit (LTFU). Maybe the last 2 weeks haven't been as dull as I said they were.

I've gotta say one thing for the LTFU. They don't sit on their fannies. As of 4pm today, two of my drugs are being reduced by 1/3. They're actually going to TRY some things to make me better. I like that.

Prednisone is decreasing from 90Mg to 75Mg. MMF is decreasing from TID to BID.

Ed just called. He'll be home in a few minutes. I'll be better then.

Saturday, January 03, 2009

Like a crack whore on found money.

Holy moley.

This afternoon they gave me DOUBLE my usual steroid dose by infusion. Yup, twice the juice directly to the blood stream.

I'm tweaking like there's no tomorrow. Anything you need done in the next 12 hours? Fix Afganistan? Resurrect the housing market? Make GM profitable?

Wow. Just WOW. Cocaine and amphetamines got NOTHIN'. Trust me.

The hospital update.

Several boring days here, but there's been lots of data generated. My PA Kevin is a great communicator.

2 more units of whole blood on Thursday. That's a lot of secret sauce in a short period. Testosterone level check - above normal. Adrenal function test - no results yet. Test being repeated. Drug changes - lighten the load on the kidneys and attempt to impact the lower GI issues. Successful so far! No diarrhea for almost 20 hours.

Rash is increasing, so they advised me this morning they're going to put me on a MASSIVE dose of my least favorite task master. 1mg per Kg of Prednisone. I've never been on such a high dose. I won't enjoy it, but the intent is to eliminate the rash rapidly and see if the gut GVHD can be controlled by a high dose.

My body is gonna FREAK.

Meanwhile, Ed has to get back to Vancouver and we drove down together. Looks like time for the bus or the train.