Saturday, February 28, 2009

Livin' it up at the Hotel Chemotherapy...

It's been a few days...I've been in a "chemo fog" for some time. The side effects are fairly manageable so far -- I had a pretty nasty case of the hiccups, of all things, but they prescribed a medicine for that. I have a bit of heartburn, also manageable by medicine. The rest is just being exhausted most of the time -- I've experienced, thus far, none of the "up and at 'em" that the dexamethasone is supposed to infuse --and thus none of the "roid rage" I've been concerned about. The exhausting does make it hard to focus, but I can live with it.

Oh, and then there's the pain. I think it must be associated with the heavy load on my kidneys but the lower back feels okay now, but directly above it, in both and back and the front, it's very painful to lie down, and painful to get up. I've been taking a little Oxycontin for it and that seems to help -- a LITTLE. The nurse says that it will be difficult to gauge pain for the next week or so because the pain from the disease will go down, but the pain from the meds will be present and when I start getting the twice-a-day growth shots to increase my blood counts, that is supposed to cause pain as well. Oh well. It will subside when it's ready.

Speaking of blood counts, I am happy to say that the elevated kidney activity that almost landed me in the hospital a few days ago is, in fact, related to the effectiveness of the treatment. My IgG (parts of immunoglobulin G per dL of blood) has falled from somewhere around 14,000 upon my arrival here to 8300. This is where it was at the beginning of January, and this is only after 1.5 full days on therapy. So far, so good.

I am on the bag for one more day, so hopefully by the time that is done, this number will be much lower already.

I'm noticing a teensy bit of neuropathy, most prominently in my left foot. I took the cymbalta yesterday and today but I will get the prescription for the B6 and folate on Monday and that should help as well.

Running out of energy for this blog. Thanks for all the email, phone calls and blog comments. I appreciate every one!

Wednesday, February 25, 2009

Wednesday: The Chemical Wedding

It got up this morning early, still exhausted from the doping the day before. If I can just make it through a couple of cycles of dex I can hopefully get past this horrible back pain.

We made it over to for the bone marrow. What with the holes in my neck, sedation was easy. I didn't feel a thing. I woke up and was pretty groggy -- but after about 45 minutes in recovery they decided I was okay to go over to the infusion center. Our schedule arrival time there was 11AM but we were there at 2:10! So I called the psychiatrist I'm scheduled to meet with at 2:30 for 4PM (knowing that would probably be a pipe dream). We figured I was out of the woods for nausea so we took 10 4mg tablets of dexamethasone. I feel neither irresponsibly rage-filled nor physically impressive. Phhhfft. Another mass media hype-job!

By the time they called us back, I needed a liter of something to combat my uric acid (now 11.3) and to bring down calclium (that was by a nasty subsutaneous injection). The good news is they thing the heightened kidney activity is a side effect of cancer cells rupturing and dumping calcium and uric acid in the blood stream. The Kidney's need help with that.

I also got another Velcade push, a shot in the belly (this one didn't hurt as much) for reducing risk of blood clots, and the final glory, being hooked up to the Platinum, Adriacycin, Cytoxin and Etoposide. Poison running through my veins, as Alice Cooper once sang.

I needed a bit more antinausea to combat all this so we've added a new pill, Ragazan or Ranmanazz or Rasputin -- can't remember which. Anyhow I'm support to take two pills per dose, four doses per day. And then cap it off with Thalidomide before I go to bed.

Hopefully tomorrow will be a better day. Should be, in theory! :)

The lost Tuesday...

Yesterday was a blur. I went to the clinic to get something prescribed for my back, to pick up the thalidomide and tamiflu prescriptions, to get something strong for antinausea, and to have labs drawn. Then we went home around 2PM and I crashed. Woke up at 8PM, did Monday's blog entry, tried to watch a bit of TV and gave up around 10PM, went back to bed.

Up at 7AM today, pain in the back has spread and it remains very difficult for me to stay focused, type a sentence without fumbling over words, etc. Hopefully these are lingering side effects of something I don't need any more of...dunno.

I *do* know that today, I have another bone marrow pull, a small one, and they've already got a hole in my neck to sedate me. Hopefully it will go very, very smoothly with no barfing. I also hope that the oxycontin I'm taking actually works because my back is killing me. Then I'll go to the infusion center for more daily labs.

Hopefully, I won't be wiped out and can write more later.

Tuesday, February 24, 2009


I feel awful.

I got to the bottom, yesterday, of why the first bone marrow under versed didn't hurt, but he crazy guy and his RN didn't get the job done. It seems the first bone marrow also included propyfol, which is a strong conscious sedation. The people in interventional radiology either didn't read the full notes from the same procedure, or weren't allowed to administer it. Either way, now I know what happened.

We checked in a the myeloma clinic to ask a dozen questions that weren't answered before and to get my mandatory pre-op counseling. In this session, a hefty doktor from former union of soviet socialist republics asked me a few questions. After a few minutes, this man who had only one vovel anywhere in his name decided I need to go on an anti-depressant as this procedure is psychologically and emotionally damaging. I hold him both BB and the mandatory psychology visit indicated that I was not depressed at all and didn't need it. He said "you should take it. I take it." I look at this guy and wonder if growing up in Chernobyl was as depressing as it sounds. Finally, he mentioned that this particular type of anti-depressant also works against neuropathy. That raised an eyebrow, so we filled the prescription just in case I start tingling!

After a lot of self-advocacy (which could be read as "whining" or "complaining") I pushed them into scheduling the two procedures (bone marrow transplant and central line placement) under concious sedation, back-to-back. They pulled this off and I woke up in recovery with a bandage on my butt and three large IVs hanging out of my jugular vein!

I felt fine in recovery, but I was verrry groggy. Groggier than I have been before on Versed. But it did it's trick. No pain, no recollection of anything, kudos. The recovery nurse pushed some water and graham crackers on me. Ten minutes later I was barfing into a plastic bag. Ugh.

Then we went to the infusion center, where I had blood drawn through one of the lovely new neck IVs, and where I had my test dose of Melphalan infused. We left.

I was too exhausted to do anything other than throw up two more times and go to sleep -- this was about 5PM. At 1:30 I got up and my back hurt just as much as before. I took an Oxycontin. I woke up at 9AM and I feel nauseous and in pain; I took another Oxycontin. Dr. Yuri Andropov was supposed to prescribe some strong antinausea meds but they haven't really done so yet -- that's one thing we will demand today.

We have a 10AM at the infusion center...I hope I leave there feeling better than I do right now. This sucks.

Sunday, February 22, 2009

Slow day...

I had difficulty sleeping last night because of back pain. Got up this morning and had to take some advil. It was a little better, but it still had a twinge. Jill ran to the store and the second she left, the fire alarm in the building went off. I tried to put my shoes on and tweaked the back...I had that same sick warm feeling that I had when I'd broken something. Then I had to walk down 11 flights of stairs, which was a bit of an exercise. False alarm. Somebody's possum casserole started smoking, evidently.

It hasn't gone away -- I thought it might be a side effect of Velcade but that's extremely rare. It's probably the Myeloma. It's a very good thing I am here...I was almost totally incapacitated today. Ugh.

Tomorrow...the bone marrow and the surgical installation of the central venous catheter. Then a test dose of Melphalan, and we pick up the Thalidomide. Ugh.

Nitey nite, folks.

Saturday, February 21, 2009

First trip to the infusion center...

I went over there for what I thought would be a quick injection of Velcade at 11AM.

We left around 2:30PM.

The waiting wasn't that bad, as I'd been anticipating it. Despite working for Disney I've never seen an episode of lost. So I've been conserving the DVDs I've gotten -- four years worth of shows. I watched the full pilot and another episode before I got called in.

That was when the fun began. They didn't have my orders ready, but they did tell me that they needed to draw more blood. "Why?" I asked. "I haven't been given any medication and you ran blood panels two days ago."

Turns out they aren't so good with answering "why" to my satisfaction. Oh well.

The real issue is that it turns out Velcade isn't a shot. It's an intravenous push. The woman tried THREE TIMES to find a vein. By which I mean she pushed in and moved it around and it hurt a lot when she removed it. Then she moved to the other arm, finally found one, and took six vials of blood before the IV push of Velcade. I am supposed to have this done every week for the next three and a half years. I may go insane if they can't find another mode of delivery.

Anyhow, so far, I feel no different, other than both arms are sore and I haven't coughed since I took all those pills! :)

Night falls on Little Rock...tomorrow looks like a day off (I'm sure they want more blood but nobody wrote any orders down for me, so they can go pound sand...they'll be getting blood on Monday anyway).

Chemical breakfast...

About to head over for the Velcade after finishing my first breakfast in anticipation of treatment.


1. One bowl raisin bran with skim milk

2. One water

3. One 200mg tablet of Fluconazole (not an Italian dessert, but anti-fungal medication)

4. One 500mg horsepill of Levofloxacin (antibiotic)

5. One 400mg tablet of Acyclovir (antiviral medication)

6. One 40mg tablet of Pantopazole (again, not an Italian chicken preparation (Pollo Alla Pantopazole) but antinausea)

7. One 75mg tablet of Oseltamivir, aka Tamiflu (flu prevention)

Funny...I had heard that a seven course meal in Arkansas consists of an Armadillo and a six-pack. Turns out it's much more involved in creating an immune system. They'll be taking my real one away starting very soon, so they're building it up while they're killing it off.

I've got a pretty bad cold right now. The meds above should obliterate it in quick order, I think!

Friday, February 20, 2009

Last notes before the battle...

So today was supposed to be a short day and ended up being long.

Went to the clinic to meet with BB. I figured it would be a 30 minute consult, and then the day would be free. That's what it said on the schedule.

We showed up at 10AM and left at 5PM.

Some notables:

1. I have been randomized into the "lite" protocol. I was advised that there is "nothing lite about it" but it should have lower toxicity and fewer side-effects than the "standard" protocol -- and it means six fewer weeks in Arkansas. This is all good and fine...provided the efficacy is the same. BB assures me he is certain that it is. And if it isn't working, he will take me off protocol and nuke me good.

2. Tomorrow, I get a test dose of Velcade by injection. This will be the first slap to the face of my cancer. On Monday, they will do a bone marrow biopsy and a gene array to determine how the Velcade works on the cancer. If it works very well, or poorly, BB will adjust the therapy accordingly. Also on Monday, they will surgically install a central venous catheter in between my clavicle and sub-clavicle. Which means I will have an IV in place for several weeks, sticking out of my neck. Sounds awesome!! But it does mean they'll do all their blood draws, chemo pushes, etc. through this port. Monday afternoon, I will get a test dose of Melphalan, and then another bone marrow biopsy on Wednesday to see how the cancer responds to the Melphalan. Again, they'll have the ability to tweak the treatment based on that data.

3. On Wednesday afternoon, full induction begins -- velcade by IV push, thalidomide in capsule form, dexamethasone in table form, and then the four chemo elements in induction (Platinum, Adriamycin, Cytoxin/Cyclophosphomide, Etopside). Collectively, VTD-PACE. This phase will last a total of eleven days, during which I'll be given two kinds of shots in the belly twice per day each to boost blood counts and fight clotting. When the blood counts return, they will swap out the venous catheter for an even bigger one, and give me shots to stimulate stem cell mobilization. They'll harvest my stem cells through the big gauge catheter, and then the transplant begins.

4. The "lite" protocol transplant consists of 4 days of high-dose chemo, but lower than the standard regimen. Standard is 200 mg/m2 of Melphalan over 24 hours; lite is 50 mg/m2 per day for four days, while continuing VTD for their believed synergistic effect. After this, I'll be given some of my stem cells back, and they'll shoot me up with meds to help my counts return. When my counts return, they'll remove the central line, and I'll take a break of around 3 weeks -- this will be my chance to go home and see the kids. I'll continue taking thalidomide and dex during this break, daily. I may or may not need daily belly injections for the clotting issue.

5. When I come back, I'll do another transplant, followed by some thalidomide and dex daily for a week or so, followed by one cycle of consolidation therapy which will be the same as the induction therapy.

6. Then I'll return to LA, with quarterly visits back in Arkansas, and I'll spend THREE YEARS on maintenance therapy consisting of oral thalidomide and dex, with weekly visits to a doctor's office for injections of Velcade.

It has been hell fighting the insurance company, and also fighting to make sure I can be sedated for all the painful procedures here. There's no clinical need for me to be alert and feeling everything in a bone marrow pull, a needle aspiration of a tumor, or the central line placement -- ALL OF THESE are done under GENERAL anesthesia at City of Hope, and at other centers from Dana Farber to Mayo Clinic they are done under conscious sedation, which is what I'm demanding. Yet I'm made to feel like I'm weak for doing so. Well, frankly, screw anybody that doesn't think I need it. There's no point in having pain for no reason, least of all because they don't want to be bothered with scheduling an anesthesiologist.'s been a long, strange trip, as a band I'm not fond of once sang. Tomorrow at 11AM Arkansas time, the fight begins in earnest. I'll post on that, as well as the wealth of meds (9 types so far that I'll take in pill form daily, plus another three given through IV, PLUS all the chemo) that I'm on and their side effects -- sobering. But I'm ready.

Thanks again, all, for your support.

Thursday, February 19, 2009

Dateline: Little Rock

This will be a quick (for me, meaning 6 paragraphs or so) update. We are now ensconced in a decent apartment which was until very recently occupied by another patient of BB's who has moved two floors up and one room over to a better apartment. Honestly, it's not too bad -- although the guest bedroom has two beds smaller than cots and no window treatments, so it's blinding sunlight in there at 6AM.

We've bought all the sundries we need, and my guitars and recording equipment are set up, as is the PS3 which means the world of Blu-Ray, DVD and videogames has been unlocked. We had sushi last night (surprising good) and barbeque for lunch today (unsurprisingly, awesome).

My friend Ray kindly drove the M6 all the way from LA to here -- a feat which was exhausting but which he admitted was kind of cool, given how nice the car is. I took him out to a nice steak (there are several sources here) and we watched funny movies until the wee hours. Then he was on his way. This was yesterday, Wednesday. After we dropped him off at the airport I stopped by the clinic to do a blood draw (pretty easy -- only six vials this time) and a circular X-ray of my jaw (rotating camera all around me...I felt like I was being filmed for the Matrix 4).

Today was supposed to be nothing to do, except I fought a lot with CIGNA who doesn't want to pay for lodging here. It's ridiculous and counterproductive -- they won't pay for a $3,500 a month apartment, but they'll pay for 6 months in a $3,500 a DAY neutropenic, air-locked hospital room. I'm going to have to spend a fair amount of energy beating the crap out of them, which is unfortunate because I'd rather spend that beating the crap out of cancer. Also, for the first time, some elements of my employer are cracking in their support. They can override any decision CIGNA makes, because they are the payor. CIGNA just administers. But right now, they aren't on the right team. I would hate for them to have to pay 10X as much...I'm really working on them. My friends at Pinnacle Care and CoPay solutions are pissed off and I don't blame them.

I did work this afternoon for a while, which felt good and natural. It's a tough time in this economy, and tough for Disney (though we are positioned better than most media comapnies). I feel bad that I am not able to be there helping out. But I spoke with my boss, who has been great through all of this, and asked to be put back on a project that I was one before I got sick. I have to imagine I can handle a couple of hours a day.

Tonight, we had dinner with Bonnie, BB and BB's wife. It was a terrific time. We got along wonderfully and I was so happy to spend time with them outside the clinical setting. I have total faith that no matter what I'm put through, it will be for a good purpose. I believe BB will cure me.

Also, in the last 36 hours, I've been contacted by three people from 30-41 who were diagnosed and are at various stages -- one is watching, one is about to start treatment, one is about to finish it -- and I have to say it is a wonder to me that people have connected with this journey. We all have a common bond -- whether it be fighting this disease directly, or fighting it with the aid of our family and friends who themselves are connected. I'm so gratified that people are reading, learning, and hopefully drawing inspiration from this. At the same time, I am so very, very thankful for those of you who are following along. Your presence strengthens me. I have no higher compliment to pay.

Tomorrow, I meet with BB in a non-social setting to get randomized and learn where I am and what's about to happen. Maybe I'm sick (mentally)...but I'm ready to commence the ass-kicking that Cancer has asked for.

Lastly...I owe a few of you phone calls. Thank you for your forbearance -- I'll give you a buzz tomorrow.

Take care, everybody. The guy you are backing is about to open fire on what ails him!

Monday, February 16, 2009

Good Night Saigon...

It's very hard to go to bed, knowing this will be the last night at home for three months...knowing that tomorrow morning I say good bye to my kids for what will seem an interminable amount of time to them, and to me. Parker is bad enough, but she'll be mostly the same when I come back to see her in three months. My little son, though, is only 17 months. And he'll be very different...maybe starting to speak in full sentences. I've set up videoconferencing so I can see them each night...but arms can't reach through a monitor for a hug. My heart breaks with all the things I'm going to miss because of this bullshit disease.

The bags are packed...Ray is with the car in Amarillo tonight and will make it out the rest of the way tomorrow, getting to Little Rock just after we've arrived, checked into the apartment, and gotten the lay of the land. My hair is cut shorter than it's ever been. Parker even said "you don't look anything like daddy."


I know I won't sleep a wink. But still I have to try.

More nonsense from CIGNA...

So the good news is I got a phone call saying that the procedures have been approved. This is once again inconsistent as they have also been asking for several more tests (a close-up jaw x-ray, a PSA (prostate) urine and blood test, and something else that escapes me). I've asked my contact at CoPay Solutions to confirm we don't need to bother with this stuff -- why waste time and complicate things if we don't have to?

They haven't yet approved lodging and transportation -- and the funny thing is, when I say "I know your policy is just deny, deny, deny, deny, deny until the person goes away" they never challenge or correct me. They had also said that the denial for my lodging and travel would be sent out about two weeks ago, and I find out today that the letter is dated February 16, so they just plain ol' lie. That's okay. I will take them on and demolish them if need be, just as I am going to demolish cancer.

Lastly, I heard from a Dr. EA at BB's clinic who completely contradicted what CS told me about mouth sores. The "we haven't seen any in two years" has been replaced by "you will probably get them, and we use ice chips to try to minimize their severity."


Anyhow, tomorrow is the big day. Any moment my hair guy is going to arrive and I will turn into a marine recruit. "With a bit of shape to it," my stylist is quick to point out. We shall see! :)

Tomorrow, then, we board our plane. I did some work with Parker on her George Washington Carver project, and we made waffles this morning. She loves helping daddy make waffles. I relished that. It's going to be a long time until we make them again.

Sunday, February 15, 2009

The last weekend as a free man...

...or, if you want to take a more optimistic view of things, the last weekend before I start killing my cancer.

I've eaten very well over the last couple of weeks -- Gary Danko in San Francisco, Michael Mina in San Francisco, and Joël Robuchon in Vegas, one of just a couple of three-star Michelin restaurants in the US. Now, it's crummy food and no wine for a long time. C'est la vie.

Some minor changes to the schedule. Our friend Ray picked up my car yesterday and began the arduous three day drive to Arkansas -- what a great guy, and we are of course very, very thankful.

We'll fly out on Tuesday. We have an apartment -- it's evidently not a very good one but it will do until we can improve the situation. It is in a good building, but the previous tenant is also a patient of BB's -- and he just wrote a harrowing account of a simple central line placement that nearly turned into one of Countess Bathory's rejuvenating spa treatments. Anyhow, the particular apartment we are moving into is evidently not exactly furnished very well. Hmm....did I bring my Blu Ray player for nothing?

Wednesday we'll run around shopping. Thursday I am going in for more blood work, although I have been assured that this is nothing like the 30-vial draw on my first visit. If they want to take half a dozen vials, I can live with it. My bet is they take the 12 or 14 that City of Hope used to do. Not the end of the world, but as I've written elsewhere, I picked the wrong disease for somebody that doesn't like needles.

I presume on Thursday I will also formally sign consent to sign up for Total Therapy 4, which is the study that randomizes between the standard Total Therapy 3 treatment and a "Lite" version that may have reduced toxicity. The core differences, and I apologize if I'm repeating this:

* Lite version has only one cycle of induction, versus two (same drugs though)

* Lite version uses fractionalized Melphalan for the high-dose treatment: 50mg/m2 for four days straight in conjunction with ongoing Velcade, Thalidomide and Dexamethasone, as opposed to 200mg/m2 in one fell swoop in the Standard arm.

* Lite version has only one cycle of consolidation, versus two (again, same drugs).

The lite version is about six weeks shorter than the regular version, which sounds good to me, but I also don't want to go through all this crap only to have it not work. So if I'm in the Lite version and I'm not achieving Complete Remission, I will ask to be taken off Protocol and given another induction cycle, etc. Similarly, if I'm in the Standard arm and achieve Complete Remission after one cycle of induction, I'll ask to be moved to the Transplant phase immediately.

Both Lite and Standard harvest after the first cycle of induction, interestingly enough.

On Friday, we meet with BB, and he'll go over the blood work, etc.

On Saturday, I will get a plain ol' shot in the arm containing 2mg Velcade/m2. By the way, turns out m2 measures total surface area of the body. Seems curious to me -- I would think that body mass in kg or m3 for body volume would be better measures...but this is the standard measure so that's the way we go.

On Monday, they will sedate me and install the port, while at the same time doing the first of many bone marrows. That afternoon, I'll get my first Melphalan application administered through the port (10mg/m2, which seems like a lot depending on how much body surface area I've got -- more than I did a few years ago, that's for sure! But the 200mg or 50mg doses they give during the high-dose chemo are administered over continuous 24hr drip versus this one IV push, so that won't be as daunting as it seems.

On Wednesday, another bone marrow. And then that afternoon, I get plugged into the chemo soda fountain for a few days.

Tomorrow, I'll be getting my head shorn pretty short. And I will help Parker with her school project. The school is observing Black History Month and every student in Parker's class drew a person out of a hat and is supposed to make a poster about that person's life. Parker drew George Washington Carver. I can't wait to help her.

In the meantime, all I can think of is the funniest bit Eddie Murphy ever did on Saturday Night Live, way back in 1984. I wonder if any of this will make it to the poster? :)

Hello, my name is Professor Shabazz K. Morton. In 1895, at the Tuskagee Institute in Alabama, a black man named George Washington Carver developed a new method of soil improvement through crop rotation to end the South's African cultural dependence on cotton alone. As a result, Carver came up with hundreds of industrial uses for the peanut. Sure, industrial uses.

Meanwhile, one night, he's having a few friends over to his house for dinner. And one of them leans over and says to Dr. Carver, "Excuse me, George? What's that your putting on your bread?" Carver says, "Oh, that's nothing but a butter substitute that I made from peanuts. I can't digest all that animal fat, you know."

So the other fellow tasted it, and he says, "Hmm.. this tastes pretty good, man. Mind if we take a peek at the recipe?" And Dr. Carver says, "Take a peek? Man, you can have it. Who's gonna eat butter made out of peanuts? No, I'm working on a method to compress peanuts into phonograph needles."

So, Professor Carver's two dinner guests...Edward "Skippy" Williamson and Frederick "Jif" Armstrong - two white men - stole George Washington Carver's recipe for peanut butter, copyrighted it, and reaped untold fortunes from it. While Dr. Carver died penniless and insane, still trying to play a phonograph record with a peanut.

This has been "Black History Minute". I'm Professor Shabazz K. Morton. Good night.

Thursday, February 12, 2009

Formal start date now set...

Tuesday, Feb 17. Arrival in Little Rock.

Wednesday, Feb 18. Get the apartment (more on this below) set up and shop for all the special things I'll need (there will be a huge run on Purell hand sanitizer at the Little Rock Wal-Mart).

Thursday, Feb 19. Surgical installation of the chemo port, and a few pints of blood sucked out for new baseline tests (what's wrong with the ones they did two weeks ago? Hard to imagine...but these people loooooooove their tests).

Friday, Feb 20. We see Il Doctore.

Saturday, Feb 21. Treatment formally begins. I receive my first anti-Myeloma agent...a test dose of Velcade, administered via an IV push. BB's studies have lately looked at the initial response to this test-dose as another indicator of high vs. low risk. Now my gene array is such that even if the Velcade doesn't make it better, I will still be low-risk, so I'm not very concerned about that. I'm pretty sure I will begin oral thalidomide and dexamethasone on this day.

Sunday, Feb 22. Whoop it up in Little Rock.

Monday, Feb 23. They dig into my hip and take more bone marrow (they made a little bit of a stink about my anesthesia demands but, frankly, too damn bad), and then a test dose of Melphalan will be administered, again via IV push. My first time willingly ingesting poison! Whooppee!!

Tuesday, Feb 24. Should still be feeling pretty good. Myeloma cells wondering what's up, probably...

Wednesday, Feb 25. They will take another chunk of marrow out of my hip, and then voila, the chemo pump gets turned on. The four chemo agents are given via continuous drip over four days. I'm on thalidomide and dex daily, and velcade is administered every few days.

Side effects start to manifest here.

Sunday, the drip stops and my blood counts begin to plummet. Hopefully the myeloma is knocked for a loop, too.

We're still looking for an apartment -- we thought we had one but it was taken by another Myeloma blogger!!!!! :O Hopefully we will get that sorted out soon.

Tuesday, February 10, 2009

Bone marrow confirmation

Just got a call from CS (Caleb Sumthin-or-other) who is BB's Physician's Assistant. My insurance wants more tests run before they will approve treatment. Apparently they need an X-ray of my jaw and to run a PSA test. Okay. Whatever. Hopefully I can do this at Dr. SH's offices in Beverly Hills on Friday but the schedule is getting pretty snug now.

I also need to get my hair cut. My stylist and I discussed this and he said he advises his clients going through chemo or radiation to get a close-cut hairdo that is still a bit more stylish than a simple buzz-cut. It's less depressing to have short hair fall out than to have hair that's 2-3 inches long come out in clumps. Sounds right. But time's a wastin'!

Oh...I almost forgot the important news. The chromosomal analysis of the tumor cells is the exact same as the bone marrow sample. That is, no chromosome 1 abnormalities, no second clone, no weirdness. This validates the gene array that BB did and overturns the weird results coming out of Cedars.

The calm before the storm...

So we're taking a few days to spend in Northern California with family and a few friends before I move to Little Rock next week. We drove up and made good time -- as we drove over the Bay Bridge towards San Francisco I reflect that I'd be missing California quite a bit.

The mood is improved. I'm not quite 100% where I need to be but the negativity and anger is almost all gone now. Thanks again for all the emails, calls and other shows of support, from close friends to people that I don't see nearly often enough to my new friends met through this process. You are all very special to me and you all make a difference.

My friend PW falls into the category of people that I don't see nearly often enough. Paul, you left a comment in my last post that had me laughing out loud. So I dedicated the following paragraph, FROM MEMORY, to you (nobody else will have a clue anyway):
"I could see my tires and wheels flyin' through the air in my rearview mirror as I struggled to keep my rig under control. The cars in back of me were swervin' to avoid the tires fallin' off the back of my rig. One truck was damaged when it hit a tire. Thank goodness no-one was hurt...and thank goodness for Good Sam VIP!" Signed Russell G. Smith, Good Sam Member #194443.

So how close was it? I'll look it back up. It boggles the mind that I can recall most of that 18 years later. Worse still, what IMPORTANT things have I failed to recall because brain cells have been dedicated to recalling that? :)

For the other 99.99% of you, that was a silly quote from the literature of a client that PW and I had back in our management consulting days, and that client (an operator of affinity clubs for RV owners) lent itself to somewhat less than polite jabbing at the Deep South. And here I am, 18 years later, reliant upon the Deep South for a cure. Ironic and humbling in equal measure. I am sorry, people of Arkansas, for pre-judging you. This is all director John Boorman's fault: Deliverance...what hell hath thou wrought???

In related disease news, I'm getting a bit more symptomatic. The one lesion on my rib is causing constant low grade pain and I feel it as the rib runs around to my back. I haven't taken any pain meds in the last week, in part because Advil could exacerbate my stomach problems, but in part because it's still manageable.

I hugged my father-in-law yesterday and for the first time felt a twinge in my left clavicle, where another lesion is forming. So I think that's all the focal lesions:

1. Left scapula -- noticed before diagnosis, manifested in pain during golf swing.

2. Right rib -- noticed in mid December. Always there, sometimes painful and sometimes not so much unless I sneeze or cough, which are two simple functions that I dread these days.

3. Lesions in my vertebrae -- noticed in late December -- crippling pain after attempting full golf swing.

4. Right clavicle -- noticed in yesterday's hug. Not painful, really, but I felt it fo sho.

5. Right hip -- sitting in the car for six hours yesterday pointed this one out to me when I stood up. More of a dull soreness.

I'm also noticing increased congestion / post-nasal drip which I don't normally have. This is white blood cells dropping and faulty immunoglobulin made by my worthless cancer plasma cells. The immune system isn't working as it should these days. I'm also tired fairly often, which is dropping red blood cell counts. Soon, my pretties, you will reap the whirlwind of chemo. Enjoy your last few days of freedom!

It's a beautiful day in San Francisco and we'll be leaving shortly for the drive to my mother's house in Santa Rosa, where we'll spend the day before having dinner with friends. Then it's back to San Francisco with a day-trip to Napa at some point. I'm getting to know Jayson Woodbridge, the mastermind behind cult winery Hundred Acre Vineyards, which makes some of the most exclusive wine in the US. He's 41, is a former investment banker who gave that up to start a winery a few years ago, and he intimated to me that he himself beat cancer. So we'll have lots to talk about -- and hopefully some amazing and rare wines to enjoy as he has invited us to the winery (which is closed to the public) for drinks and food. He makes no white wine, so I brought one of my best white bottles as I would think it would be quite boorish to bring a varietal that he makes.

We are still working on an apartment...other than BB and Typhoid Bonnie, there is no sense of urgency in the south. Jill is getting fidgety because she wants to be organized and it's tough when we have no idea where we are living -- and I don't blame her one bit. I also haven't yet set a firm start date, because we were supposed to hear from BB but did not. I emailed Bonnie, who is always quick to respond (I joke about her boy-crying-wolf business but she is an extremely caring person). Bonnie's response was that she was "in a crisis with somebody" and would call me today.

Knowing Bonnie, this could mean:

(a) a neutropenic patient being rushed to the hospital with pneumonia and a dangerous fever


(b) somebody misplaced the jug that they have to pee in for urine tests.

Never can tell. But again, it's impossible to deny that her heart is in the right place and she is fully dedicated to her patients -- even if that includes the occasional needless panic. :)

Be well, everybody. I'll write later in the week.

Sunday, February 8, 2009

Film Therapy

So here I am, after virtually no sleep, depressed, feeling sorry for myself and lying in bed trying to watch TV.

I upgraded from Tums to Zantec after I wasn't able to sleep because of the pain in my stomach. It seems to be working a bit better, although I feel weak and nauseous. Maybe this is good training.

Anyhow, HBO was showing a film I'd always wanted to see and had heard plenty about but never seen...The Deer Hunter.

Watching this, it seems, was a mistake.

Bad enough that it's the most depressing film I think I've ever seen but the central character is a guy named Nick who blows his brains out.

I'm reminded of a time when a high school friend of mine had a bad experience with a girl and went into such a funk that he watched My Dinner With Andre for six days straight, over and over, with the only breaks for rewinding the VCR. I don't see how this could have improved his mood as after watching it only once, let along the 30 times he must have seen it, I wanted to jump out a window.

Anyhow...when in a bad mood, choose your flims wisely. I'm going to watch something lighthearted like The Seventh Seal next...I hear that somebody plays chess with BB's alarmist nurse in that film.

Thanks for the comments, emails and phone I said, this is a chronicle of my daily journey, not just the high points. I appreciate your support.

Saturday, February 7, 2009

Another lousy day

Worse than yesterday. I am disillusioned, disappointed and angry. If this was a diary, I would write more, but it's not. So let me just say...things are very bad. I've lost a lot of will to fight, and my energy level is depleted. I've been unflinchingly positive since diagnosis...and the events of the last couple of days have sapped that all from me.

Here's hoping things turn around. One thing is for sure: some things will never be the same.

Friday, February 6, 2009

A lousy day

They can't all be good ones, I suppose.

We got all our Trust and Will stuff taken care of, and I did our taxes and am trying to get the decks cleared so I can focus. Meanwhile, the idea of being separated from our kids is causing real problems for us, especially Jill, and these problems are placing a real strain on our relationship, which in turn is placing a great deal of physical and emotional stress on me. I'm popping Tums like they are candy -- I *never* get stomach pains but I feel like I'm getting an ulcer.

Maybe tomorrow will be a better day. Meanwhile I'm looking into private nursing options in the event that Jill won't be able to be with me the whole time.

The apartment we're looking at renting is not cheap, but it costs about the same for a month as a hospital room does for a day. Of course CIGNA doesn't see it that way. I'm preparing to appeal and hoping common sense will prevail over policy. I've also let the folks at Disney know since they are the payor and can theoretically override whatever decision CIGNA makes.

I'm supposed to hear from BB this evening at some point to get things scheduled; failing that I guess we'll speak on Monday, or perhaps over the weekend.

It's hard to stay positive. But I'm sure I'll bounce back.

Thursday, February 5, 2009

Q&A with CS, BB's Physician's Assistant

Upon reviewing the recording I made of the second consult with BB, he really wants to do induction, transplants AND consolidation therapy in Little Rock. And the more I think about it, the more justification there is for it. He knows what to look for, and all of these therapies are very interrelated.

I set up a call with CS to go over the protocol in minute detail, for two reasons. First, I want no surprises. I learned about the needle aspiration AFTER arrival at the clinic last week, and I didn't like that. A routine blood draw in Arkansas turns out to be a medieval blood-letting, and that was surprising and disconcerting. The injections of isotope and contrast for the PET and MRI weren't anticipated, and that was also disconcerting. So now, I want to know everything that is going to happen, so I anticipate everything and there isn't anything to jar me out of my sense of ownership of this process. Managing this process is how I keep my sanity.

Secondly, I had a very bad experience, as noted below, with the needle aspiration. I'm going to be very insistent that I am made comfortable during procedures that hurt. This will likely include more painkillers and more sedatives than they are used to using, but frankly after they did a procedure on me without any sedation, they lost the ability to EVER say "oh, you don't need X Y or Z, we're only doing such and such."

So I'll post most of the questions and answers here. They'll likely be more detailed than is useful for many of you, but in this case it is also a document of record for my own convenience.



What tests, if any, are performed before a port is installed, and if any involved blood draws or anything else, what is the rationale for not doing that once the port has been installed?

What kind of port is installed, and how is it installed? Where will it be located? What is the procedure for installation? Is this done under general anesthetic, as it is at City of Hope? If not, is there an option for that?

Once installed, is this port used for all blood draws, infusions, chemo, injection of isotope for PET scan, etc? What needle pricks, other than bone marrow for the gene array, require anything more than this port?


There will be an initial visit at the clinic, where they would normally do bloodwork (of the 30-tube variety) to establish baseline numbers. However, since my visit was pretty recent, they can probably put this off. They will install a catheter underneath my clavicle. This is done with local anesthetic only. They would resist doing this at the outpatient clinic, and would either do it at the interventional radiology clinic or the central line clinic. They don't normally give conscious sedation for this. Once installed, this port remains in place for major phases of the program (most likely through the end of induction). All blood draws, tests, infusions, chemo, isotope injections, etc. are done through this port.


I will NOT be willingly going back to the interventional radiology clinic as that's where the jerk did the needle aspiration. I don't like the fact that they don't give conscious sedation for this -- they are striving to keep all of this outpatient without the need to deal with stuff like anesthesiologists at the main hospital, etc. City of Hope does it under general anesthesia, but then they do all of this stuff in-patient anyway. Since this sounds like something that is tolerated very well and it doesn't involve boring into my bones, perhaps this is a good test of the ativan and fentanyl lollipops. In any case, I'm relieved that they'll do this one installation and then I don't need to have a million other things stuck in my arms every other day.



What is the precise protocol? When are bone marrows done and how many are done? What other tests are typically done? Can they be done under conscious sedation, rather than just the lollipops? What side effects from the induction agents am I likely to experience (i.e. nausea, diarrhea, mouth sores, neuropathy, etc.), how likely are they to occur, when do they occur and when do they end? What agents are given to minimize these effects, how effective are they, when are they given, and in what manner (i.e. oral meds, IV through the port, something else)? At what point, if ever, are chemo agents reduced in dose? At what point will I be neutropenic, and for how long?


One the port is installed, a small test dose of Velcade is given (1mg/m2). 48 hours later, bone marrow is drawn (typically the patient is given the lollipops for this) and another gene array is done. In some cases, this can result in a re-allocation of patients from 'low risk" to "high risk" categories, and it also provides a glimpse into how the disease is going to respond to the Velcade. On day 3, a test dose of Melphalan is administered, and another gene array is done 48 hours later. THEN, there is an 11 day induction regimen, consisting of Velcade on days 1, 5, 8 and 11, continuous drips of the PACE chemo agents from days 5-8, and thalidomide and dexamethasone (not daily but something like four days on and two days off). After the last chemo dose, they start injecting me with a "growth factor" agent to boost my blood counts. There is a clinician who looks at blood and performs a bunch of equations on the counts to determine how much of this to give me and when and how many days will be required. This is done via injection in the subcutaneous fat of the belly and is one of the few needles that can't be done through the port.

As far as side effects, nausea is not uncommon but is generally controllable. Mouth sores are very, very rare. Very little neuropathy is seen until bridging therapy (between the two transplants). They stick to thalidomide during the bridging therapy because Revlimid causes platelets to fall, and if bridging goes on for more than a few weeks, it can cause neuropathy. They have been putting patients on B6, B12 and folate supplements and that seems to have reduced the instances of neuropathy. Diarrhea is unavoidable. There will also be neutropenia, and the precise onset and duration are patient specific but most occur 3-5 days into the cycle of chemo and it lasts for about a week, depending on how rapidly my body responds to the growth factor.

Some patients experience discomfort in the lower back from the growth injections [ed. note "discomfort" is doctor-speak for agonizing pain] and they prescribe standard painkillers such as Oxycontin (somebody kill me if I turn into Rush Limbaugh). If the platelet count is above 40, they will also prescribe Lovinox shots (again in the sub-cutaneous fat in the belly) to reduce potential for deep vein thrombosis (blood clotting). [ed note: if the platelet count is high, why not just put me on the damn Revlimid????]

During induction, there is typically a once-a-day visit to the infusion center. They will do a PET scan 7 days after the chemo treatment is over to determine how the disease is responding to the therapy, and as BB told me before this is a useful indicator of long-term prognosis.


All in all, sounds pretty good. I'm not looking forward to the shots in the stomach but they don't sound as bad as I feared (I was thinking rabies vaccine based on what I'd heard from a couple of other folks). I'll see how the lollipops work for the catheter placement and if they work fine, then maybe I'll try them out on the bone marrows as the Versed at this joint isn't exactly foolproof. Otherwise I will insist on Versed or something stronger. As for the side effects, I'm prepared for all of them. Neuropathy is the one that worries me the most so I'll just keep an eye on that. It does sound like the biggest risk there is during bridging, because there's a lot of thalidomide administered and if that runs three months between transplants, I've got a lot to deal with. However, BB pushes as aggressively as possible and I suspect I will be lucky to have one month between transplants, much less three. If they can control the nausea, I can deal with the diarrhea. Glad to hear there aren't any mouth sores. I'm resolved to lose the hair -- that will grow back. Look out cancer -- whole lotta poison coming your way!!!



Is the port removed, or kept in place? If not kept in place, how is it removed? If I am on the lite arm and fail to achieve complete remission (CR) after the first cycle of induction, can I receive another cycle, either by shifting protocols or going off protocol? If I am on the standard arm but achieve CR after only one cycle of induction, can I be moved to the lite arm? If I do two cycles of induction, and each cycle is three weeks, how long is there between each cycle? Would I be well enough to see visitors, see children, travel on a plane at this point, etc? At what point do injections for stem cell mobilization (this is the term for coaxing the stem cells out of the marrow and into the bloodstream) begin? How are these injections given (through the port versus other means)? What other injections, procedures, tests, etc. are run and what do they entail? What invasive procedures, if any, are performed at this point?


The port is kept in place but the catheter is switched out to a larger gauge [ed. note sounds horrible]. BB will get the patient the most effective therapy regardless of which protocol. CR is the goal (although only achieved about 50% of the time). There is very little time between induction cycles because BB is very aggressive. Some protocols would be three weeks on, one week off. BB will be three weeks on, then on again as soon as your blood counts can handle it. So it might be ten days between cycles or it might be three. Traveling is not an option for that reason; it might be possible to see the kids if they aren't sick. Injections form stem cell mobilization will begin as soon as the blood counts return, and this is of course monitored daily. There will be bone marrows done after each cycle of induction. These cannot be performed while I am on growth factors as the results will be skewed.


So many bone marrow biopsies, so few hips. I'm getting very tired of them and I've only had two. Let's hope we find a way to keep me unaware of what's going on. I'm not going to be shy about it -- I have to be my own advocate and I don't care if they think I'm a wimp because I want to be heavily sedated before they shove a stainless steel ball point pen through my hip. The nurse who is helping us arrange a place to stay in Little Rock called, by the way, and said the installation of the port is a "horrible thing" so screw CS, I'm gonna be out of it before that happens. They can do it in the outpatient surgery center, frankly. This nurse also said she hasn't seen any mouth sores in a long time, which is great news.

As for the rest of it, it sounds pretty good. I'm all for getting through this quickly and keeping the cancer on its heels, unable to regroup. Maybe I'm insane but if they can control the nausea and all I have to worry about is bad diarrhea and exhaustion, I'm gonna be fine.

So long as they sedate me before any of these heinous procedures. When the port is removed (after each transplant / recovery) they evidently just have you hold your breath and they yank on it. This, to me, sounds insane. So insane that I thought he was joking. He said people say it feels weird. I BET it feels weird. The last time somebody asked me to do that it was when I had nose surgery and a guy ripped five cubic feet of packing material through one of my nostrils. That was hell. The last thing these Arkansas folks said would feel "weird" was the digging around in my hip for the needle aspiration. That sure felt weird all right! Sedation, sedation, sedation!!


This basically all got distilled down to a few observations:

* They use the wider gauge catheter for the stem cell collection and infusion, so that means I don't need to have needles in each arm for six hours a day. It usually take two days, and they will collect an average of 20-25 million stem cells per m2. This is enough for seven transplants or so.

* Side effects are more pronounced than the initial regimen but are generally the same. Mouth sores are not that common, nausea is often controllable, diarrhea is not, fatigue is not.

* Generally one visit to the infusion center each day, but the days are long. Bloodwork is done in the morning, then we wait several hours while they check the results and determine how to adjust the infusion regimen that day.

* The recovery period between transplants is typically four weeks to three months, and again it is usually as short as possible and guided by BB's sense of where the disease currently is. Given my age, I will probably respond quickly and BB will want to hammer home the second transplant ASAP. I'm betting it will be four weeks...which will allow me time to come back to Los Angeles.

* Between transplants, I will be on bridging therapy, consisting of thalidomide and dexamethasone. This will be where the neuropathy has a chance to strike, particularly if it's a long bridge, as the thalidomide will be given daily. I'll have to keep an eye on it, and also consider that B6, B12, folate cocktail.

* When it's time for the second transplant, I'll go out, have another bone marrow done, and have the port put back in. I told them that I want to be knocked out for this. Frankly, why not put me under, do the bone marrow and install the line at the same time? He didn't seem to want to sign up for I shall have to see if I can be more persuasive in the future.

* After the second transplant, again it's typically 3 weeks to 3 months before the second transplant -- another opportunity to come back. And then I'll need to return for consolidation therapy, which is precisely like induction therapy except that the doses are reduced by 25%. I will have the same side effects but they won't be quite as severe. Depending on whether or not I need one or two cycles, I'll be in Arkansas three weeks to seven weeks.

And then I will come home, cancer free, to begin maintenance therapy. That therapy last 3 years, but can be done in Los Angeles. I will make quarterly visits to Arkansas during this time. And each time, another bone marrow is done. My aching hip...

The Bottom Line:

I'm ready for it all. Provided they cooperate and properly anesthetize me before doing any painful procedures (the bone marrow draws, installation of the IV catheters, etc.) and provided they give me enough medicine to keep the nausea and mouth sores away...I'm ready.

Message to my myeloma cells: I'm gonna kill every last one of you sonsobitches and I'll smile while I'm doing it.

Tuesday, February 3, 2009

City of Hope and a first decision made...

We went out to City of Hope and toured the place, including perhaps most importantly the hospital for stem cell transplants. It's a beautiful campus, and the hospital opened only three years ago. It's very bright, a beautiful building with a lot of common places that have unobstructed views of the mountains, etc. It's also very technologically advanced and the floor dedicated to neutropenic patients was very impressive. We went to tour it and passed through two airlocks to get into the section where air is hyperfiltered and completely exchanged every 15 minutes, etc. If I stay there, I won't be getting sick, I don't think.

Unfortunately the rooms themselves are dismally small. So much for my hopes of writing music, playing video games, working, etc. They look like they are about 150 square feet plus a small bathroom. All of a sudden, a condo in Little Rock looks pretty good...

Which brings us to Big Decision number one. I'm going to do induction in Arkansas. It makes too much sense not to do so. As I may have written, in the words of someone I've encountered who is going through BB's program right now...

It is not just about mirroring the treatment regime. There are many more subtle aspects to the team's approach here that no doubt have a very positive effect on their outcomes. Their resources are unmatchable. They can generate lab results faster than anything I've ever seen. They track everything on an almost daily basis, looking for potential red flags or signs of trouble that can be headed off at the earliest. For example, they routinely do blood cultures from my blood draws, just in case I get sick they will already have something growing in the lab and will know exactly what to treat it with. Typically cultures are only drawn when you are sick, and then it can take up to 4 or 5 days to identify the particular virus or bacteria. Everyone is put on Tamiflu right away, to prevent or lessen any flu events. I've had the flu for the past 3 years, twice developing into pneumonia. No preventative measures were ever taken in my treatment in Denver. Before a new patient is seated in the infusion room the chair is wiped down with alcohol. I'm sure there are many more differences that are unknown to me. But I'm confident the results achieved here are not due solely to the combination of chemo drugs.

So I'm going to do induction there, unless my questioning of BB's resident yields some unwelcome surprises. We spoke with SF about this and he agreed it was smart. He also suggested doing the stem cell collection there, since during collection there are additional elements to the protocol. He did think we could do transplants at City of Hope, and I do think he's an excellent doctor and I believe the quality of care would be excellent -- plus it would be nice not to be away from the kids for such a long period of time. On the other hand, the hospital rooms are like little dungeon cells.

We'll be looking into condos in Little Rock, and then looking into whether or not insurance will be sensible. A condo for a month is less than a hospital room for two days, and if I did the induction at City of Hope, I'd be hospitalized for a week per induction cycle, so if they are sensible, they'll spring for the condo. We'll have to see. Based on previous behavior, I'm not expecting reason to prevail.

Meanwhile, I am compiling my list of 101 questions and will hit Dr. CS (BB's resident) up with them soon.

Monday, February 2, 2009

A few important facts and figures from BB's data

Based on a number of conversations and excellent questions from friends, I wanted to share a little bit of data that should give you some idea of why I am prepared, if need be, to move to Arkansas for treatment, and why I'm going to subject myself to treatment that many people in the medical community regard to be brutal or overkill.

BB presented to the American Society of Clinical Oncologists in 2008 with, as I think I mentioned elsewhere, a presentation entitled "The Myth of Incurability." That presentation can be downloaded in PDF form here for those interested in seeing all of it. It is data rich but if you are used to statistics and interpreting graphs, you'll probably get a good amount of it. I got about half of it upon first reading but now I'm so familiar with the acronyms that I get the point of the whole thing.

Anyhow there are a several charts I want to show you (shades of Ross Perot in 1992, was it?).

First, some background. The concept of "Total Therapy" was first introduced in the treatment of acute lymphoblastic leukemia in children. It refers to the notion of using all known effective treatment at once (colloquially I've referred to this as the "kitchen sink" approach) versus starting with one set of drugs, then moving to a stronger set of drugs once the disease overcomes the first, etc.

The first chart shows the results of this therapy over 45 years, in six major "groups" of study, each reflected in a line on the graph.

By the way, you can click on these charts to expand them -- they tend to be pretty small.

On these charts, the Y-axis is the % of survival, and the X-axis is time. There are several things one can take from this slide, but for our purposes the most important thing to note is that after 5-6 years from diagnosis, if you're gonna die, you're gonna die (presumably with your boots on...Iron Maiden song reference there for my 3 friends who listen to that music).

The lyrics of British heavy metal bands aside, you'll note that the curves "plateau" after about 5-6 years. Meaning if you've made it that far, chances are you have beaten the disease the the likelihood of recurrence is pretty low. Overall Survival is of course the gold standard, but at this point I am shooting for the higher bar of Event-free Survival, which means there is no trace of the disease.

NOW...BB saw this data from St. Jude's Children's Research Hospital and began applying the same theory about 20 years ago for MM. Since that time he has had three major studies (versus the six shown on these pages). They are called Total Therapy 1, Total Therapy 2, and (obviously) Total Therapy 3.

Bear in mind the Leukemia & Lymphoma Association still says that median survival is 5 years from diagnosis (meaning 50% of people are dead from the disease by this point). But get a load of BB's results in the charts below:

You'll probably want to click on this one. It's good progress, right? 80% of people are still kicking 4 years after treatment begins on Total Therapy 3, and the previous therapies show that after 10 years, the same type of plateau that we see in children's leukemia emerges. If you can stay alive for 10 years, there's a good chance you can actually beat the thing.

Still, the data is great if I'm in the, say, 60% of people that are gonna make it 10 years, and not so great if I'm in the other 40%. But here's where things get interesting.

You'll DEFINITELY want to click on this one.

The charts on the left show event-free survival and overall survival for "low risk" patients in Total Therapy 3 (the group which I was so relieved to be part of), while the graphs on the right show the same statistics for "high risk" patients. Among low-risk patients, about 80% have event free survival four years from enrollment in the program, and about 82% are still alive.

The really interesting thing, though, is that these data include deaths from EVERYTHING. In the first two years, there's about a 10% mortality rate. This includes about 5% treatment-related mortality (remember, a lot of folks with this disease are old and this is a brutal treatment regimen). I'm very, very unlikely to fall prey to that. So you can shift all the survival data up 5% for me.

Then, consider mortality from other causes (if somebody is diagnosed at 72, and dies of natural causes at 76, they are counted as dead). If somebody drinks too much 198 proof moonshine from pappy's still just outside Little Rock and strokes out, he's counted as dead. If somebody forgets to look before crossing the road and gets flattened by the Little Rock Trolley (which I observed circling downtown for a week without a single passenger on it), he's counted as dead.

The sum total of this is...I think there's an 80% chance this therapy will cure me.

I just got off the phone with the Chief Medical Officer of the Multiple Myeloma Research Foundation, who hasn't drunk the BB kool-aid but does believe my logic is sound. Like me, she thinks I could consider doing the induction in Arkansas and the transplants in Los Angeles, and I'll discuss that with Dr. SF tomorrow.

Meanwhile, I'm compiling my list of questions for Dr. CS (BB's resident) which I'll hit him up with later this week. Meanwhile, BB's office called telling me I have an appointment with him this Friday -- that ain't gonna work. I'll see if they can do something by phone. Hopefully it's not because of a discrepancy in labs or anything like that...