Day One report

It's 11:30am of Day One. I got out of bed at about an hour ago. I'm a bit spent.

Last night was pretty rough with some nausea and considerable churning of my lower GI tract. Thankfully it seems to have resolved itself this morning. I'm still a bit tired due to a lack of good sleep last night.

I'm going to speak to the SCCA today about my hydration program. I don't think my bladder should be full every hour. There's another reason I didn't get much sleep last night.

How do I feel? Pretty good, just spent. I feel as I would have 5 years ago after a rough night. Nothing new.

Transplant details

Here are the transplant details:

Last Sunday, the donor started doing chemo to make his body produce excess bone marrow stem cells. Yesterday he was hooked up to an aphoresis machine with an IV in each arm. The machine pulled blood out of one arm, filtered it to separate the stem cells from his blood, and then returned most of his blood to his other arm. I estimate this procedure took 5 hours. So, chemo for 5 days and then hell for 5 hours. Amazing.

In my case, the chemo and prep started last Monday with Total Body Irradiation at 11am Friday morning. Basically they bombard your body laterally with radiation from head to toe over about a 20 minute period, then they literally turn the gurney around and do the same to the other side of your body as if you were a rotisserie chicken or shawarma/doner kabab. There was no "Shake and Bake" used. Apparently the effects of the radiation can be quite devastating for some patients. The techs commented that I performed in the 95th percentile because many people apparently pass out during the process. Yes, I felt something, but I can't exactly tell you if what I felt was psychological (knowledge that it was radiation emanating from the source of sound), or whether there was an actual physical sensation. It was quite subtle.

Anyway, I went to sleep during the process and wasn't pleased that they kept waking me up every 2 minutes to see if I was OK. It wasn't high stress for me. WAY easier than getting me to go into an MRI.

Ok, so I bailed from the radiation facility at about 12:30 and my buddies Suzie and Pam took me home for a couple of hours. Thanks Suzie and Pam!

Suzie picked me back up at a little after 2:30pm so I could check into the hospital for the transplant. I clocked in at almost exactly 3pm and watched TV until our friend Chao arrived for a visit. Chao's a good guy. (We talked about Ed a lot.)

Soon afterward, Ed arrived from Vancouver with smuggled Chinese food. Unfortunately it was from Panda Express (food court junk). Not to my appetite. I ordered hospital food. (The UW hospital has "room service" and a complete menu. Not bad, but slightly industrial.)

Chao had a dinner date with friends, so Ed and I watched TV for a few hours until about 11pm, whereupon it was announced that my transplant cells would arrive at midnight. Hmmm..... two hours earlier than previously advised.

Sure as heck, about 5 minutes before midnight, two bags of Sangria arrived, slightly chilled to 74F. They were individually hung from their "botas" and infused into my central line over the next three and three quarters hours.

Unfortunately, they checked on me every 15 minutes or so to make sure I wasn't having a reaction, and when they were finally done at about 4:30, Ed was snoring like a cartoon character. I didn't get much sleep last night and they allowed me to check out of the facility at noon today. I was there for only 21 hours.

Today has been a bit of a recovery day. People ask me how I feel and I have to say I'm surprisingly good, considering what everyone has told me I should feel like. Yes, I'm sleepy and slightly worn out, but overall I feel healthy enough.

Heck, we went out for dinner with friends tonight. I must feel adequate.

Was I freaked last night? My blood pressure didn't show any signs of stress. The BP was about 120/70 and my pulse was in the 68 range just before I took the bullet.

We'll see how it goes from here on out. Life goes on.

Still alive and kicking

It's just after nine in the morning. I've had breakfast and the docs have been to visit. Apparently I'm still alive. Everyone tells me I look good.

For what it's worth, I feel good too.

They're doing the paperwork to release me now.

Day Zero times two

Today is/was supposed to be another Day Zero.... a new birthday again after my November 30, 2007 birthday.

Now I get a new birthday, but it's not technically today. My cells will be infused at about 2am on Saturday, August 30, 2008.

Today's radiation sorta wore me out, but it took several hours for me to feel crashy. I'm ok now though. Ed is here with me and will photograph the process. We'll post a couple of them if they're not too graphic.

Tomorrow, August 29, 2008

Tomorrow is the big day. I've been prepping for this all week. Now's the time.

The bullet is gonna strike me.

I have a blood draw at 9am. This is followed by a prep for radiation. At 11am I get a TBI which means Total Body Irradiation. They'll stop when I glow in the dark like an old Timex.

Then they'll tell me when to check into the hospital sometime later in the day. Hopefully Ed will be down from Vancouver by then.

When the donor cells arrive from wherever they're flying in from, I'll take the bullet.

And then we wait. Tick tock tick.

24.2

I want to take a minute to thank my donor. As most of you are aware, somebody I don't know has just endured a week of chemotherapy and approximately four hours attached to the most bizarre machine on the planet on behalf of someone unknown. Me.

He's a 24.2 year old man from the US with Type A blood. If you're him. Thanks.

It amazes me that people are willing to do this kind of thing for a complete stranger. It amazes me more that someone who is only 24 would be familiar with the system, be prepared to join the registry, and follow thru with the procedure. The only thing I thought about when I was 24 was getting my pencil sharpened.

Thank you, thank you, thank you.

Reactionary

I took my dose of cyclosporine at 9am and then went for my infusion this morning. The allergic reaction returned. It wasn't as bad as yesterday morning but it was worse than last night.

Solution? Nothing specific. We're going to change the delivery vehicle/method from one type/brand to another type/brand. I'll return to the SCCA this evening and test the new stuff in their presence.

Ahh, the fun of drug allergies. They add so much to the cancer/chemo experience!

The challenge

We re-challenged my system last night with Cyclosporine. I took my evening dose at 6:30pm at the SCCA. There was still a reaction, but it was minor and not worth worrying over. I was exhausted when I got home.

I'm going to take my dose this morning prior to going to the SCCA for my third infusion of Fluderabine.

I'm starting to feel a bit run down. The strain seems cumulative.

Unfortunate event.

I had problems this morning. I took the my newest prescription, Cyclosporine, which is used to prevent transplant rejection. It's supposed to make my body more accepting of the transplanted cells.

Well, I had a systemic reaction to the drug. Big time. Thankfully I was in the center when it started.

50mg of Diphenhydramine thru my central line and it started to subside after almost an hour.

Ever take Benadryl? That's diphenhydramine. 50mg is equal to two regular tablets, except they injected them right into my bloodstream thru my central line. Holy krapp! It actually made me spaz out.......

Anyway, I have to go back tonite at 6:30 to retest/challenge the drug to see if I have the same reaction.

The two new drugs

Today I picked up two special drugs for the transplant. They are Cyclosporine and MMF (Mycophenolate Mofetil). Both of these drugs help prevent transplant rejection.

These drugs aren't used to keep me from getting GVHD. They're used to prevent my body from destroying the newly transplanted cells before those cells can do their job. Essentially, the drugs suppress my immune system.

For what it's worth, my co-pay for these drugs was $377. Yeah, really..... and Ed and I have very good insurance.

Anyway, I start the cyclosporine tomorrow and the MMF about 4 hours after my transplant. Taking the cyclosporine is a strange process. The pills are HUGE and I take 5 of them twice a day. That's 3 each of the 100mg and 2 each of the 25mg. Here's the odd part - I'm supposed to open their sealed foil containers and "let them breathe" for a few minutes. They have been variously described as smelling like "skunk" and by one less gracious individual "the inside of an elephant's ass". I guess I can make my own determination at 9am tomorrow morning.

Breakfast will consist of 2 fried eggs on toast with a side of skunky elephant ass. Yippee. Can I have some apricot jam with that?

Mini Allo Step One - Day One

The SCCA wasn't quite ready for me today. My infusion was supposed to start at 10 am and it actually started at 11:30. Something about the pharmacy being busy. Whatever, I have time.

My blood pressure was seriously elevated..... 150 over 100.... but that was probably due to stress.... My face and attitude were positive, but I was obviously a bit freaked out.

The whole process started with a Zofran, which is supposed to resolve nausea in chemo patients. Eventually my nurse donned her hazmat suit and started my infusion.

Hazmat suit? You're putting that stuff INSIDE me? Well, whatever.

And then they fed me lunch. Where is the intersection of Zofran, chemo, and lunch? Anyway, I ate the turkey sandwich, the pasta salad, and the apple sauce as if I were returning from fasting..... and I'm eating a braunschweiger/mustard/mayo sandwich right now.... Zofran and chemo seem to make me hungry.

Regardless, I took the step. I didn't chicken-out. The trigger has been pulled.

45 minutes

We start the transplant process in 45 minutes. I'm rapidly approaching the point of no return.

Dunno what I think about that any more.

18 hours

In a little under 18 hours, we pull the trigger on the mini-allo transplant. I'm supposed to arrive at the SCCA at 9am to begin the process. I'm oddly calm.

Ten thousand hits.

Oddly, I was my own 10,000th hit. Funny.

Chrazy Chemo!

I got my new chemo and meds instructions today from the transplant team. Holy Moley! This is gonna require the use of Microsoft Project and an Excel spreadsheet to get it right!

There are four pages of data for a total of 20 required meds and 9 optional meds. There are 5 time-points per day, and at each time-point I'm supposed to be taking something.

I have meds that should be taken on an empty stomach. I have meds that need to be taken with food. I have meds I can't have within 2 hours of eating dairy. I have meds I can't have with grapefruit.

The schedule has me taking pills at 7am on an empty stomach. Then I'm supposed to take more pills at 9am with food. Oddly, it also has me taking pills at 9pm on an empty stomach. Basically, my day has been divided into 5 segments with meals at 9am, 1pm, and 6pm. I'm only allowed to have dairy between the hours of 9am and noon.

Does this sound complicated? Heck yes! I guess the simplest method will be to set up a precise daily calendar and also eliminate all dairy from my diet. This is going to feel a bit like working on a production line.

In the words of the Beatles:

Woke up, got out of bed
Dragged a comb across my head
Found my way downstairs and drank a cup
And looking up, I noticed I was late

Found my coat and grabbed my hat
Made the bus in seconds flat
Found my way upstairs and had a smoke
Somebody spoke and I went into a dream

It's gonna be like this for a while.

Data review conference

Today I had a data review conference with the team from the SCCA. It was a review of consent forms as well as a recap of my health conditions with regard to the multiple myeloma and transplant.

My blood numbers are not all normal, but they're in acceptable ranges for treatment. CMV is under control. Everything is a "go" for Monday, August 25, 2008.

However, there were a couple of things that concern me:

1) According to an echocardiogram, I had a heart attack sometime this year. The doctor doesn't necessarily believe the EKG because there were no supporting symptoms I reported. Regardless, the EKG says I had one. Odd.

2) The donor has Type A blood. I have Type O blood. Apparently this won't be an issue with a mini-allo. There's a possibility my blood will eventually change to Type A. At least that's what Ed says.

3) The donor is a 9 point match (of 10). Our major mismatch is at one of the "DR" alleles. I do not produce an antibody for this allele so the doctor says this will increase my chances of having graft-v-host disease (GVHD). There is some benefit to a bit of GVHD as this is what combats the tumor, but excessive GVHD is what degrades the quality of life and/or kills the patient. Have the odds changed?

4) It was once reported that I had chomosome 13 exclusions. Now I'm being told that there are/were none. Was I lied to in the beginning, or have those chromosomes disappeared thru treatment?

5) There were apparently a high number of chromosomes without clonal matches. In other words, these chromosomes have no replicants. They exist independently in their abnormal state. There was no explanation as to why they exist.


Tomorrow I will be trained on my new chemo. Monday I start the process. I'm a bit anxious. Ed is slightly frantic.

5 days

Transplant chemo starts in 5 days. This Friday afternoon they'll teach me about my chemo and how to handle it. Ed comes down to Seattle on Friday night. We'll probably have dinner Saturday with friends. Then Ed will return to Vancouver on Sunday night. I'll be flying solo thru chemo and radiation that first week. I can probably get Suzie to help if I need her, but I don't have a precise schedule from the SCCA yet, so it's difficult to set-up.

My brother called me this evening. He realized he hadn't spoken to me in some time and wanted to catch up on the info I don't blog. We probably talked for 30 minutes or more.

One of the things we discussed during the phone call is the perception that reading this blog could give one a sense of knowing everything that goes on. Readers might get the impression that life is wonderful and relatively uncomplicated. They might think that Ed and I have everything worked out and we merely follow a well designed routine.

Nothing could be further from the truth. Yes, Ed and I have arranged our lives reasonably. We're intelligent guys and we're not into drama or complexity. However, between making our weekend commute between Seattle and Vancouver, shuttling "stuff" between our three locales (including our storage unit), and the fact that I live in an empty house during the week, there are a few minor issues with our daily existence. These issues cause stress. We miss one another and I'm bored as hell. I actually watched part of Oprah today.

Oh, you might remember we're trying to get me into Canada as a Permanent Resident. We're still following the procedure and making a little progress every week. You wouldn't believe some of the things they want from us, but it moves forward.

Healthwise, I think I mentioned I had a CMV infection in my esophagus and upper stomach. It's been treated with gancyclovir (350 mg/BID), a coating agent, and some topical lidocaine (I get to swallow it.) The result, as of this morning is a return to my 180# weight (fully clothed). Basically I've put on 10 kilos or 22# in thirty days. Doctors tell me not to slow down because I'll need the extra weight soon. Hmmmmmmm....... what are they really saying?

Oh, about the house. Zillow.com shows the house value at $146,000 more than the asking price. I haven't had a single bite yet. I haven't even had a rude lowball. Of course, good old Zillow also says my neighbor's house is valued at $859,000 which is only $370,000 more than he was asking for it two weeks ago. Real estate agents are insane and the market is their spawn.

So, that's how our life goes until next week. Then all the rules will change. Well, maybe. Maybe not.

Ten days of freedom

I'm in Vancouver today. I came up yesterday evening right after my last appointment at the SCCA. Ed and I are going to spend the next couple of days enjoying the city and finishing the last 1% of moving him in here. According to the schedule that's been presented to me, this is probably the last time I'll be in Vancouver for quite some time.

14 Days

In 14 days I start the chemical process that will prepare me for irradiation and transplant.

That's 14 days until the firing squad pulls the trigger and the firing pin drops. 15 days until the primer ignites the charge. 16 days until the charge propels the bullet down the barrel and across the space between the shooter and myself. 17 days until the bullet strikes me.

Then we have 90 - 120 days for us to figure out what the bullet has done.

Oddly, as the time approaches, I've become less chatty. Less introspective. Less forthcoming. Even less involved at some level. Maybe I'm in denial. Maybe I'm just accepting the enormity of the gamble. Maybe I'm just ready to move forward, wherever that may be.

Ed and I are both scared. Certainly no one can blame us. We know the stats. We know the possibilities. We understand the biology. We've discussed it. We've cried over it too often.

Don't worry if I'm a bit quiet for the next two weeks. It seems to be where I'm headed.

Visa

Ed's visa for entry into the US expired last night at midnight. Today he had an appointment with the US Consulate in Vancouver, BC for a new visa that would allow him to take care of me during the upcoming transplant and continue his work with the University of Washington.

It was granted, in spite of the determination that "You have strong family ties in the US", which is code for "We're concerned that you'll go across the border and disappear into the woodwork to become an illegal alien".

Yeah, he's been playing the visa game for 10 years and suddenly he's gonna become an illegal alien in the US. Maybe he can push a tamale cart in LA... You know, take one of those jobs the arch conservatives think the little brown people are stealing from "Real Americans". Somehow I don't think that's a worry.

Anyway, the interesting part of this whole process is that the only family Ed listed on his application was his husband, little old me. When did the US Consulate start recognizing me as family? Do they worry I'm gonna fund his tamale cart and hide him in the woodwork?

Hmmmm.... Now I have to Google "tamale cart". I might need to set aside some operating capital.

(Note to Homeland Security: File this under "sarcasm", or "humor", or "sarcastic humor.)

The new official date

The new official date for my transplant is August 29th. We'll have to see if it slides any more.