Wednesday, October 31, 2007


At 3:15 this afternoon, I walked into the bathroom to pee (imagine that) and I glanced in the mirror. My right eye was bloody. Yup, a tiny little hemorrhage that filled about 1/3 of my eye with blood.

Oh, you know, one of those blood filled eyes you might see the day after a fight...... Just blood between the white of the eye and whatever covers the white. (I'm an optimist, not an optometrist.)

So, since I'm supposed to call the SCCA with anything out of the ordinary, I called the number on the magic list.

"Uhhhh, can you come directly to the 5th floor triage?"
"Come now."
"Cool. Bye!"

And so, I was off like a bunny. I got to the SCCA in 20 minutes flat and reported to the 5th floor checkin at 3:45.

THIRTY MINUTES LATER, someone took my vitals. The triage nurse called my team PA and he came down. After 5 minutes with him, I was told "Nothing to worry about." and was sent home.

Fun afternoon.


I just got back from the SCCA. It's official. I have no immune system. I'm neutropenic. The basic range for neutrophils is 1.8 to 7.x and I'm showing 0.22 thousand per ml. Yup, if you do the math that's 12.2% of the established minimum. Obviously my white blood cell count is correspondingly low.

Now, don't get all worried. This is the result we were going for. This is a good thing! It means that the melphalan they gave me in the hospital has worked. I've been getting injections of growth factor every day since the melphalan dose, so we should see a turnaround in my numbers asap.

Now I just need to figure out how to keep dirty little kids away from my front door.

Tuesday, October 30, 2007

Just one more thing.....

The nurse just left. He gave me my infusion kit and full instructions to my new girlfriend, Wheezy. Basically she's a battery operated infusion pump in a backpack. Yup, a backpack. Inside the backpack is the hydration solution, Wheezy, and some basic service meds.

Why do I call her Wheezy? Because the pump makes an electric motor/gear noise that sounds like a wheeze. The wheeze lasts just about a second, the time between wheezes is about two seconds.

I have to date Wheezy seven hours every day until they tell me to stop dating her. Why do I feel like I'm trapped in an arranged marriage?

From the sublime to the ridiculous....

I just got back from the SCCA. Blood sample, "G" injections, consultations. It was the consultations that were the most interesting.

Remember way way back to yesterday? I was taken off fluid infusion because I appeared to have no problem staying hydrated.

Well, fast forward all the way to 10:45 this morning and I'm being put back on an infusion pump for more fluids. Fortunately these will be self administered via a home infusion pump, so the seven hour procedure can be carried out while I attempt to have a normal day.

Seven hours? Why so long? It seems they're bumping my infusion volume to 1500 cc / day from the prior 1000 cc / day.

Now do you wanna hear the fun part? I had a consultation with the dietitian about 15 minutes after the infusion consult..... and she wants me to drink 90 ounces of liquid every day. NINETY ounces. That's roughly 2600 ml of fluids every day.

If you add the two things together, you get 4100 ml. Yes, Jimmy, that's 4.1 liters or about 1.1 gallons.

Just call me Mister Peepee.

Monday, October 29, 2007

Reprieve from the Governor

The SCCA has had me on infusions since I left the hospital. One liter per day over a period of 5 hours. Yeah, 5 hours sitting in a little room with lousy TV.

Well, today I was told that my numbers are as they're expected to be, and that I seem to be staying hydrated, so I've been let off the hook for the 5 hours of boredom. I still have to do 3-4 hours with them every day, but the arduous part is over.

Minor blessings.......

Sunday, October 28, 2007

End of outpatient day two.

Ed and I got up at 6am so we could get him to the airport. He's Canada bound for a week. I scrubbed, dressed, and drove him to the airport, then returned home. Sometime later I headed off for the SCCA for the daily infusion. One liter of saline plus a GCSF ("G") injection.

It's freaking exhausting sitting in those little rooms for 5 hours. I dunno why, but there's something about lying in those little beds watching TV and being interrupted every 30 minutes that wears me out.

Anyway, I was out of there at 2:30 and I came home. Bone pain is about a 3.

Out of hospital, days one and two.

Saturday and Sunday service consists of a blood draw followed by 5 hours of infused fluids. Yup, that's 5 hours to pump one liter of saline into my system. Sometimes I get a treat and they add a little bag of magnesium. It's a tiny bag, so we're calling it the mini-mag-bag.

Sometime during the long infusion process, the staff PA comes to see me. Poke, prod, query. Wonderful time.

At the end of the whole thing, my body sorta feels like rolled up doggie dookie, so I come home and go to bed so I can sleep 12 hours until my next scheduled abuse.

Did I mention my immune system is mostly gone? It'll be back next week. Oh, and I just put Ed on an airplane for Canada about an hour ago. He'll be gone all this week.

Friday, October 26, 2007

Hospital day two

According to the docs, all my basic bodily functions are working fine and I can go home if I continue to infuse fluids. They just wanna keep my kidneys working.

So, I'll go home later today.

Sleepy as hell.....

I'm back home, exhausted. I have enough drugs in me to supply Ecuador.

One of the drugs kills bone marrow. The other drug causes the bone marrow to flourish and enter the bloodstream. My skeleton feels like it's being pulled in two different directions and I need sleep.

5 hours worth of procedures tomorrow at the SCCA. Yes, Saturday service. I'm thrilled.


Thursday, October 25, 2007

Hospital Day One

I've been here for about 3.5 hours now. It's noon-thirty. Poking, prodding, talking, cleaning, teaching, etc. has been this morning's regimen.

Fun stuff. They measure all my inputs and outputs. This means I have to save all my output, and I'm not talking about printed pages of spreadsheet data!

Right now they're infusing 240ml/hr of a wonderful little beverage made up of Dextrose, Sodium Bicarbonate, and Potassium Chloride. I think it's a 2007 vintage.

So let's think about this. 1060 ml of fluids injected directly into my bloodstream over a roughly 4 hour period. I think I'm gonna need to pee. I also think I'll swell up like your great grandmother's ankles!

OK, it's just a bit after 2pm. The doctor just left. No news, no changes, no alterations. I ordered lunch. Ed just called to check on me. I told him to go back to work.

Three PM. The nurses have been in the room prepping for my "Secret Sauce" chemo. I have a second line attached to my Hickman and they're infusing basic saline. They'll attach the magic Secret Sauce as soon as it arrives. (Secret Sauce has a life of only one hour, so they have to be ready.)

Funny, I just remembered that the doc said something to the effect of: "If you feel good tomorrow, we may let you go. If you don't feel good tomorrow, you could be here for 5 days."

Waiting for another damned shoe to drop.

5:15p - The poison has been administered and I feel fine so far. No allergic reaction. I'm swelling a bit, but it's not bad.

11 pm on day one. Nothing odd is happening. Peeing a lot (which is required) and not experiencing much in the way of effects. Going to sleep soon.

It's 8:15 am, which makes it the then of the first 24 hour period here in UW Hospital. Lots of fluids overnight, lots of peeing, no particular side effects except for a little bit of fluid retention. Peripheral neuropathy / leg pain / bone pain kept me up a lot last night. Sleepy as hell. Gonna eat brekkies soon.

End of Day One.

Wednesday, October 24, 2007

Today and Tomorrow

Today's news: I got my Hickman from Hickman. He's an interesting guy. He's a vascular surgeon and looked at a particular vein on my left arm, exclaiming "Alice, come here and look at this! I've never seen anything like this before!"

It seems I have a superficial vein in my arm that goes around in a circle. Yeah, it's just a little cul-de-sac. Vein comes down, makes a 360 degree circle, and then re-attaches to itself.

Dr. Hickman probably worked on Methusela's veins when Methusela was just a boy. For him to say "I've never seen anything like this before!" makes me realize I was his reason for getting up that morning..... and it makes me also see that I'm a bit of a freak. I'm so proud(?).

Sure, I've been looking at that vein for 52 years, but it never occured to me that it was wrong. Now I know.

Anyway, the Hickman/Hickman went quickly. I was already sleepy when they put me on the table and the small amount of sleepy-sauce put me right out. Next thing I knew, I was being asked to wait for Ed.

Dr. Hickman said, "We nailed that one."

The 2 PM consult was mostly informational about tomorrow's adventure.

At 9 AM I'm supposed to show up at 8NE of the UW hospital to check in. During my stay, they'll give me every drug on the planet PLUS some Melphalan. There was a brief discussion about what the Melphalan might do, but since everyone reacts differently, there are no guarantees.

The general consensus is: Thursday will be OK. Friday will probably be OK. Saturday might suck a little. Sunday might suck a lot. Monday might suck worse. But on the other hand, it might not suck at all.

I'm taking the laptop so I can blog from the center of hell. I'll keep you posted.

Tuesday, October 23, 2007

How can you help?

Some friends have asked what it takes to become a bone marrow donor. In my case right now there's no particular need to worry about that, but if anyone is interested in joining the fight, you can go to and read the FAQs.

Personally, I think it's a great way to become an "organ donor" in a way that keeps both the donor and the recipient alive.

I hope you're sitting down.

Ed and I just got back from a consultation with my attending oncologist. I'll tell you right now that the meeting ended with her saying, "I'm sorry I had to give you guys this news."

Here are some facts that have never been seen in my prior tests:

1) My cancer cells are mutating at an alarming rate. There are chromosomal inclusions and exclusions being seen in the bone marrow, bone samples, and they're freely circulating in my bloodstream. She says these cells are "80% involved", which I take to mean that 80% of them are mutants of mutants.

2) My blood numbers are increasing and are not responding to normal chemo treatments.

3) She is proposing doing an allogeneic transplant instead of an autologous transplant. Unfortunately I don't have any suitable family donors, so we'll have to go out to a stranger. This means we're throwing the dice needing to make our point. There is an 80% chance of morbidity, mortality, or severe "quality of life" issues. Yeah, 1 in 5 comes out of it normally.

4) She is seeing a significant increase in affected areas of the bone. There is evidence of bone necrosis in my jaw already, which is sometimes the case in this disease. Basically the jawbone dies because of blood supply issues and, well, you can guess what the results are.

5) Several other areas of bone loss are evident, including areas of my spine, legs, and arms. Acropolis is crumbling from the inside. I should probably begin to limit my exposure to high physical stress.

So here's the plan, if you can call it that.

A) They'll put a Hickman Catherter in me tomorrow morning.
B) They'll put me in the University of Washington Hospital on Thursday.
C) They'll put some Melphalan (60mg?) in me to kill some bone marrow.
D) They'll let me out of the hospital 24-48 hours later.
E) They'll see if the newly restored bone marrow is cleaner than what I have now.
F) If the numbers improve as a result of the Melphalan, they'll do a harvest.
G) If the numbers don't improve..... we didn't exactly discuss that part.

So, procedure tomorrow, hospital Thursday, out on Friday, feel like crap from Friday to Tuesday, get more investigative procedures later next week, guess and ponder.

Oh, did I mention that Ed has to be gone during this particular time? Yeah, it's something we can't change. I just have to deal with it.

Here's what it boils down to. There's an 80% chance I'll never work or play again. EIGHTY FREAKING PERCENT. No more pride of accomplishment, no more motorcycles, no more home improvements, no more nothing other than watching Oprah and getting fat on the couch. No trips, no adventures, no real life.

Sorry to be so morose, but it's depressing.

Monday, October 22, 2007

Disturbing news

I had a visit with my consulting oncologist today. He communicates regularly with the SCCA docs and he sorta gave me a heads-up on what I might hear tomorrow or Wednesday during my scheduled meetings with SCCA staff.

1) My disease is progressing very rapidly now that I'm off chemo.
2) Aggressive treatment will be proposed this week.
3) An allogeneic transplant must be considered instead of an autologous.
4) My counts aren't looking good.

Waiting for the other shoe to drop.

Friday, October 19, 2007

Day off.

I had the day off today. Nothing scheduled at the SCCA so I did some work. Of course, I started the day off by visiting the SCCA for next week's schedule and to pick up a scrip for antibiotics.

I now take 18 pills a day and none of them is chemo. They're all prophylactic and/or preparatory for the next two weeks. The number will be increasing soon.

Bone pain in my pelvis and peripheral neuropathy in both legs has been waking me up 3-4 times a night for the last couple of weeks. It's increased considerably since my recent bone marrow sampling. Waking up 4 times in 8 hours doesn't contribute to a good night's sleep.

I'm really tired of being in pain. But that's enough whining.

Thursday, October 18, 2007

What a day.

Up at 5:30 to make a 7:30 appointment with an endodontist. You know, an oral surgeon! Yeah, fun. I spent 3 hours in his chair with as many as 6 instruments, a dental dam, a bite block, and a frame in my freaking mouth! (Seriously, there was the doctor and two techs with both hands full at one point.)

Ok. In the chair at 8, out of the chair at 11. Out of the parking garage at 11:30. Missed my consult with Dietary at the SCCA and went directly to my repeat/substitute MRI.

I was on the table for 2 hours. It was a hard table. The back pain was killing me. I was basically lying on the bone marrow biopsy sites.

So I've had a lovely day. The good news is that I have nothing scheduled on Friday or Monday. I wonder if the SCCA gets lonely without me.

Wednesday, October 17, 2007

MRI failure #2

I showed up this morning for my MRI. 28 miles from home. Early appointment (they opened 1/2 hour early just for me).

The MRI machine crashed. None of the coils came online.

I drove back home. We've rescheduled for tomorrow at 1 pm.

My dental work consisted of 2 temporary (1 year) fillings on the right lower teeth. We discovered the work wasn't covered by insurance AFTER they were done. I got to write a check for the procedure. I wasn't happy.

Tomorrow starts with a pretty major dental procedure at 7:30 am. Then I have and 11 am consult with the nutrition team and my 1pm MRI

Gee, I don't even know what's up for Friday.

Minor failure.

Yesterday afternoon I got my full skeletal x-ray series and I took some light sedatives for the MRI to follow. See, I'm claustrophobic as heck.

Anyway, I got to my mellow place with the drugs, but STILL couldn't tolerate being shoved into the bore. I'm an MRI failure! :(

Anyway, I'm off to visit an open MRI this morning. At noon I have a dental appointment for some nastiness, and then a blood draw, pulmonary test, and a consultation.

They own me.

Tuesday, October 16, 2007

Blogging from the SCCA

The SCCA has a resource center that includes a few computers. This is my first time to use them.

Half of my Tuesday is complete. I've been consulted twice today, done a food safety class, and now I'm sitting around waiting for a full body series (x-ray), followed by an MRI.

I got some good news today during one of the consults..... It seems they're going to move ahead with the mobilization and transplant process using a series of drugs called C/E/D. Looks like it will start next week. (No, I don't know what C/E/D stands for, but it's basically the high strength chemo that was alluded to yesterday.)

Monday, October 15, 2007

Long day.

I had a blood draw at 7:45 that actually happend early, then I was scheduled for a consult with a gastroenterologist at 8.

There was no receptionist available until 8:15. I was ushered into a room at 8:25. The gastro showed up at 8:30. She asked questions until 8:45 whereupon she said she needed to look up some records and left. She returned 30 minutes later with another doctor who asked some more questions.

See, neither of them had done their homework and actually read my chart or previous labs. I finally had to be rescued by a PA who knew the real scoop. Some doctors suck. My PA is terrific.

Anyway, I also had an ultrasound echocardiogram done at UW. I was almost late for the appointment because of Dr. Nohomework. The echocardiogram tech hinted that he saw nothing unusual. Certainly they're not really supposed to say anything, but he sorta gave me the wink and suggested everything was OK.

Ed and I had an appointment with the SCCA social worker. She made us aware of some different options and programs available to us, so the hour was pretty informative. The only thing that came up in the meeting that sorta disturbed me was Ed's apparent discomfort with some of his caregiver requirements. I'll have to talk to him tonight about that.

After the last appointment with the SCCA, I had to go over to VM Hospital for some more labs. 6 vials this time. I think I've been stuck half a dozen times since Friday morning.

NOW FOR THE BAD NEWS. It seems that my disease is returning very rapidly since I went off chemo exactly a month ago. The bone marrow biopsy showed the disease to be agressive. I have free myeloma cells circulating in my bloodstream. My blood numbers (the bad ones) have doubled in the last 4 weeks.

This means they're going to have to do another round of very powerful chemotherapy prior to stem cell collection. This also means that the transplant cannot happen less than 30 days after my last chemo day.

Just to give you a hint into what we're looking at: dexamethasone will be readministered and the suggestion has been made that dex might not be my biggest problem.

So looking forward to our Wednesday conference with the attending.

Tomorrow is orientation, a food safety class, another medical consultation, skeletal x-ray series, and an MRI. Another long day.

Sunday, October 14, 2007

Good weekend!

Ed and I had a good weekend. We took a trip on Saturday with some friends and their two boys to a town called Leavenworth. It's a German themed town, rather touristy, but it was PACKED with people because this is probably the last really nice weekend of the season.

The scenery was beautiful during the 3+ hour drive. We and our friends are going to research buying some property up there. We found a listing for 20+ acres at $29,500. Obviously it's completely remote. No water, sewer, or electricity. Just us, the trees, and the bears. (And the deer and the antelope.)

Last night I "remembered" why I've been feeling so good the last couple of days. My doc put me on prednisone, another steroid (but much milder than dexamethasone). Prednisone is a Virgin Mary or Shirley Temple. Dexamethasone is moonshine with a heroin chaser.

Unfortunately I'm off the prednisone tomorrow. I expect to crash a bit. SO looking forward to it!

Friday, October 12, 2007

First Friday Adventures.

I arrived at the SCCA this morning at about 9:20 for a 9:30 appointment with the dental group. They inspected, probed, prodded, and said "Hmmmm" and "Ahhhhh!" a lot. Seems I'm going to need some pretty extensive work before they let me go into transplant. I need a wisdom tooth worked on (like a major filling and possibly a root canal), and I have two crowned teeth that will probably need patchwork fillings to prevent near-future problems. Yippee! (NOT!)

I spent $24 on special toothpaste that my insurance won't cover.

And then I went in for my pamidronate infusion at 10:30. It's supposed to take 2 hours. It took 3.5. The nurse wasn't having a good day and managed to blow out a vein in my right arm, then the scrip was late in arriving, and well...... it was just one of those days.

Meanwhile, it was a gorgeous day in Seattle and I spent most of it watching TV. I should have been out riding.

On Sunday I have to pee in a giant bottle for 24 hours.

Next week's schedule starts Monday at 7:45 am, then an 8:00 consult, then 9:45 at another facility for an ultrasound, then a 1:30 back at the SCCA and Ed has to be present for this one.

Tuesday starts at 10:15 with a consult, then a training class at 11:30, then another consult at 12:30. These are followed by a skeletal x-ray at 3:30 and a full body MRI at 4:00

Wednesday is another consult at 3:45 and Ed should be present for this one too.

Thursday is an 'optional' class at 9:30. Then another consult at 11:00, followed by a pulmonary test at 2:00.

Who knows what Friday might bring. They own me.

Thursday, October 11, 2007

Holy moley!

Sorry if this post is a little goofy. I'm still pretty drugged up.

I went into the SCCA at 7:00 am this morning. That's when they open the doors. You know how it is.... when a business opens its doors, they're never ready for business. It's the same for hospitals.

I was double booked for two events at 7. One was supposed to be a simple blood draw and a pickup of a 24 hour urine kit. The second was a consultation for what I'll describe below.

It seems there were a couple of complications with the orders for my blood draw...... I was seen at 7:25 and the whole (7 vial) draw was finished at 7:35. This is the first time anything like this has happened at the SCCA, but they have a very strict policy about patients being on time, and if I'd been 25 minutes late, they would have probably rescheduled me. Whatever.

Anyway, the nurse upstairs wasn't too hapy about the delay but we moved on. If you remember from yesterday's post, I was scheduled to get another bone marrow biopsy today. You know, suck out some bone marrow, do a core sample of the bone itself.... No big deal if you're a fan of Mengele or DeSade.

The first words out of the nurse's mouth were, "Did they tell you we're going to be taking samples from both sides?"

"Uh, no! Bilateral?"

"Yeah, sorry they didn't mention it."

So that started well (NOT!)...... My least favorite procedure on the planet and they're going to do it twice today..... as a surprise...... I was glad I'd opted for a bit more than the local anesthetic I'd gotten the first time.

Ed was there and he watched me drift off into the land of the calm. See, I hadn't chosen complete sedation. There's a level between "local" and "unconscious" that seemed just perfect for what I expected..... but now that my expectation had been doubled, I wondered about my choice.

So I dissolved a pill in my mouth and then swabbed a special narcotic lollypop around my cheeks and gums. I didn't really become unconscious.... I just got to a special level of 'sedate' that Ed probably would like to see more often.

And then....... and then...... they pulled down my pants, flipped me on my belly like a cheap date, and poked me with a local anesthetic. (Actually, she was terrific..... very communicative and tactile. I couldn't have asked for better.)

First came the right side. Local injection below the skin. This was followed by another local that penetrated the muscle all the way down to my hip bone. Slight pokes followed by a stinging sensation. No big deal.

And then....... and then........ a giant freaking poke from what felt like a trocar (you don't wanna know). Her next words were, "This next part is gonna hurt."

She sucked blood and bone marrow into the Syringe of Satan.

Now here's the deal as I understand it. The bone is surrounded by a nice thin layer of nerves sorta like Saran Wrap. You can numb part of it with the local, but the net effect of sucking blood and marrow out of the bone is that the layer of nerves gets slammed against the bone because of the change in pressure. So if you can imagine, a rather large area of sensitive nerves becomes highly active when the vacuum cleaner effect is applied.

It hurts. OMFG it hurts. I mean...... it HURTS. I've crashed motorcycles at incredible rates of speed, and this procedure HURTS. Pain shoots down your leg, across your ass, and part way up your back.

Did I mention it hurts?

Oh, and that's just part one of the pain issue. Now she has to get a sample of bone by using a core sampling device. Basically it's a hole saw that's manually operated. She applies pressure, twists back and forth until it's sunk far enough into the hip bone, and then she yanks it out like a wine cork.

Did I mention it hurts? Should I mention she didn't get enough the first time and she had to do it twice on the right side? Did I mention that the second sample hurt too?

Ok, so now it's over....... NOT! We still have to do the left side! OMG, OMG, OMG, OMG! And it begins again. This time the pain goes all the way down to the back of my knee and up to my shoulder blade. Fortunately her core sample got enough bone in the first pass that we didn't have to try it twice.

But now I'm drugged up, lying on my belly with my pants down, somewhat shocky, and I have matching bandaids on my upper cheeks. Wow, I feel like Superman!

Ok, it's over...... I flipped over, pulled my pants up, and layed there eating graham crackers and drinking juice until Ed returned from his appointment. We went to the pharmacy, got some paperwork, and came home. Now I'm just sitting here like a zombie. I've been sitting here for 3 hours.

Did I mention it hurts?

I'm gonna go to bed.

Wednesday, October 10, 2007

Phase One, Day Two

I had about a bazillion things done today. EKG, panorex dental x-ray, chest x-ray, and a consultation with a new doc about options.

Tomorrow is a bone marrow biopsy, some blood work, and a consult (after being doped up for the biopsy).

I was strongly reminded that the transplant process I'm about to endure will not cure me. I have to wrap my brain around that fact.

I will not be cured.

The best we can hope for is for me to be disease free for some time. If everything works out OK, I could get 7 years. On the other hand, I could get 9 months. Reality exists somewhere in between. Typically, patients get 2 years.

Damn, all that work. All that money. All that effort for a measly 2 years.

But it gets more complex than that. See, they take enough cells to do 2 transplants. In a reasonable number of cases, the disease recurs within 90 to 120 days after the first transplant. Sometimes they simply manage the symptoms for a while and then do another transplant, but the best results seem to happen if they go directly to a second transplant as soon as the disease returns.

My second option is an allogenaic (?) transplant from a sibling or HLA matching donor. Well, my brother isn't a useable donor, and my sister probably won't match my HLA type. This would leave me with the option of an HLA matching donor, but the mortality rate (due to graft vs host disease) is as high as 50%. Not my cuppa!

So, gimme a while to absorb the fact that I'll probably die within 2 years and that life will semi-suck until then. Sorry to be so morose, but I've gotta adjust.

Tuesday, October 09, 2007

First week's plan.

Ok, I'm back from the SCCA with this week's plan.

Today I had a basic physical and some blood tests. I also met the "team" and got lots of info and asked a lot of questions after I answered about a billion.

Wednesday, I'll meet with finance and get an X-ray or two. Then there will be a conference with the doctor and a dental exam, followed by an EKG.

Thursday I get more blood drawn and my lovely bone marrow aspiration (for which I've asked to be heavily sedated).

Friday I get to follow up with the dental folks. I also get next week's schedule.

More info later.

Monday, October 08, 2007


Tomorrow starts the process of stem cell harvest before the bone marrow transplant. The stem cell harvest isn't too horrible, but the phase after that, the bone marrow transplant is the part that actually kills 4-10% of the patients. (Depending on what you read.)

For the first phase, the harvest, they put a port in your chest that goes directly from the outside world to your heart. Then they give you massive doses of chemo to force the bone marrow to create stem cells and release them into the bloodstream. Then they harvest the blood and sort out all the stem cells. During this phase I'll probably be anemic and my blood chemistry will be pretty goofy. This is the easy part.

For the second phase, that I hope to start in November, they'll dose me up with so much chemo (and possibly radiation) that ALL of the bone marrow in my body will be killed. Obviously my blood numbers will be goofed up, but I'll also have zero immunity to infection because all the white blood cells and the bone marrow will be dead. After they kill everything, they put the stem cells they harvested back in my bloodstream and hope they recreate bone marrow. This goes on for 21 or more days. No, a nice room in the hospital (where all the germs are) is not a nice place to spend 21 days, but it's the place where they can catch and cure an infection asap.

Now the odd part. From what I've read, once the bone marrow is recreated, I'll have no natural immunity to anything I've ever had. I have to be re-inoculated for measles, mumps, chicken pox, etc. Yeah, all that goes away with this process! Wierd.

So, after the process and the recouperation, I might be able to get back to work for the start of 2008...... and if it all works out, there will be no more multiple myeloma cells in my system. Of course, that would only place me in remission, and there's the potential for recurrence, after which they can do the transplant process again and/or just keep me on maintenance chemo for the rest of my life. Quality of life is a big subject in my house.

I'm sorta lucky. The Seattle Cancer Care Alliance (SCCA) and the Fred Hutchinson Cancer Research Center are the places where this whole process was developed. Fred Hutchinson got a Nobel Prize for the process. There's not a better place on the planet to get this done.

Thursday, October 04, 2007


I've made a decision. The harvest starts this coming Tuesday, Oct 9. It will take a total of approximately 31 days.

My decision is that I'll proceed directly from harvest to transplant as soon as they'll let me. If the schedule works out as I anticipate, that will have me leaving the hospital (post transplant) sometime around Thanksgiving. Ultimately the plan is to be able to enter 2008 as a relatively healthy humanoid.

More details after the 9th.