Aux fin de 2007

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

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

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

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

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

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

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

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

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

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

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

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

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

One can hope. Mostly, one can fear.

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

Prednisone High

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

Yeah, they're strong.

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

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

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

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

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

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

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

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

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

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

SUPERMAN (It's not easy)

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

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

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

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

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

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

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

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

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

Its not easy to be me

Some good info

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

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

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

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

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

Graft vs Host Disease (GVHD)

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

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

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

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

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

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

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

Hoo-Wee!

Stoned. STONED!

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

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

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

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

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

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

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

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

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

Clinic

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

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

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

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

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

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

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

Anyway, I'll keep you posted.

Day 18 - New realities.

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

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

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

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

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

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

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

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

(1230)

Escape from Alcatraz

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

Retrospective

Odd. Almost exactly 15 months ago, I wrote the first entry into this blog.
http://motocancer.blogspot.com/2006/09/ok-heres-deal-with-little-history.html

Day 15 - Hospital day 11

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

I won.

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

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

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

(1100)

Day 14 - Hospital day 10

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

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

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

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

Hair today, gone tomorrow

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

Day 12 - Hospital day 8 of 10?

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

Day 11 - Hospital day 7 of 10?

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

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

Day 6 of 10?

Serious fever (102.9)

Day 5 of 10?

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

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

Day 3 of 10?

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

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

Hospital day two

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

UW Hospital

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

Day 04

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

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

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

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

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

Yesterday SUCKED!

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

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

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

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

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

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

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

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

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

So that was yesterday.

Day 03

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

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

Day 02

Slushy weather.

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

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

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

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

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

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

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

Stinky!

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

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

I can see the marketing campaign now:

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

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

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

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

Birthday

I got my stem cells today. I guess it's supposed to be my new birthday.

The whole process was severely underwhelming. Hydrate for 2 hours, then hook up, infuse for 36 minutes, disconnect. Get 2 more hours of hydration.

Anti-nausea pills make a guy sleepy. I tried to eat after Ed came home. I got about 3 bites down and fell asleep typing this blog. Gonna go back to bed.

Everything is OK.

36 hours in

I haven't eaten much. I've limited myself to fluids, canned meal substitutes (Ensure type products), and water. The idea of real food turns me green.

I had a canned meal substitute, a small container of apple sauce, a bottled water, and one bite of a pig-in-a-blanket for dinner. It took me 3 hours to eat it.

At about 9 pm I went to the bathroom and felt a wave of nausea...... with violent results.

The odd thing was that I'd felt just fine until I relaxed a couple of muscles to pee, then all hell broke loose. Sudden nausea with instantaneous projectile vomiting. It looked like a horror movie. I was fine (and quite empty) about a minute later.

They tell me I shouldn't be this queazy yet. They say I shouldn't be this bad until about the 5th or 6th day. They also tell me they'll have to hospitalize me if I can't get any nutrition.

BTW - I'm taking anti-barf pills.

24 hours in

I feel like warmed-over manure. I'm operating under my own power but doubt I'll be able to do so for very much longer. I don't think the giant hand has swung the hammer yet. I'm afraid he's just pinching too hard as he steadies me for the giant whack.

I have to be at the SCCA in an hour and a half.

12 hours in

Tired. Feeling lousy. Wanna barf. Going back to bed.

8 hours in

Tired, feeling like I'm coming down with something. (Not that I am, but I feel like it.)

Drinking water - just plain water. Imagine that!

The anti-barf pills seem to be working. Going back to bed.

4 hours in

I'm 4 hours in. I just had lunch and it's not settling perfectly. I have pills for nausea that are supposed to be taken at 12 and 24 hours post poison.

Still pretty stoned from the ativan. I was having a good nap until Verizon Wireless decided to text me to let me know my bill was available online.

I think today is a lost day for a lost boy. Maybe I'll try to read.

The point of no return.

I've past the point of no return. The poison is in me and there's no way to reverse it. The deed is done.

Bone marrow death started about an hour ago.

I'm so stoned on ativan I can hardly type. Gonna take a nap. Talk to you later.

Petrified.

Batman is scared. Very scared.

At 8:00 am tomorrow, a giant hand will hold me against the mud of an unknown swamp. With one giant blow, he'll hammer me into the ooze below my feet. Then I'll be hammered and hammered again despite the fact that my head is already below the surface.

Hopefully the giant hand will grow tired of this in a few days and let me eke my way out of the ooze.

Ed and I have talked about this: I'm not afraid of death, but I'm scared as hell of suffering on my way there. Tomorrow starts the suffering with the intent of avoiding death.

The truth is that I really don't want to do this. Conversely, I really want to be cured (or at least asymptomatic for some time), and we hope this will have some beneficial effects. I'll endure the suffering in pursuit of a greater goal. I just wish there was another way.

For you medi-technophiles out there, I get a massive dose of Melphalan tomorrow. It will cause ALL of my bone marrow to die. I'll be neutropenic (no immune system) for much longer than I was during a previous dose. It will cause side effects that put 90+% of patients in the hospital for 14 to 21 days. I'll have severe inflamation of mucous membranes. (Figure out where those are, and imagine stunning inflammations. Yup, eyelids and everything from your lips to your anus.) Unimaginable inflammation.

I'll have such poor blood numbers that I'll probably get several transfusions. We already have a couple of them planned.

I'll be so weak they'll worry about my ability to dial 911 or call Ed. As a result, they want Ed by my side 24/7. At the same time, they want me to come see them once a day, every day for 30+ days. Maybe the hospital would be a blessing.

It gets worse, but I won't bother with that here.

I'm scared. I really am.

In the meantime, I'll blog until I can't blog any more. Heck, it's time for more Christmas card pics!

Your daily fix.

Apparently some people get tweaked when I don't post something for a day or two. Either they're really concerned about me or they need a daily installment of their favorite soap opera, "The Days of our Cells". (Seriously, I appreciate that some of you worry if you don't hear anything from me.)

Odd segue begins here:

I was going to use the title "Make no bones about it" as the soap opera name in the sentence above. Then I got to thinking about what the expression really means.

Well, it apparently means to: 1) state all the facts and leave no doubt. 2) have no hesitation or scruples in speaking about or dealing with some matter, no matter how awkward or unpleasant.

Now, I was originally going to use the expression because of multiple myeloma's severe and debilitating effect on the skeleton. It was going to be my little play on words for the day. Turns out it's a bit more than that. Call it my big play on words for the day.

Are you starting to see a peculiar parallel between multiple myeloma and my method of coping with it in this blog?

Suddenly I feel empowered, as if I own "Make no bones about it". I mean, if MM is destroying my bones, and I'm not making any bones about it destroying my bones....... Well, you understand.

End of odd segue. Resumption of normal thought processes:

The job interview turned out to be a waste of time. I was completely candid with them regarding my health and situation, as well as my expectations for recovery and what I could do for them (and when). They opted to skip the opportunity to hire someone they considered a rare find. In any case, it was good to be reminded I have marketable skills, that I have some commercial value, and that my skillset is unique.

I've been feeling better than I've felt in 18 months. Life has probably been better than this, but I've forgotten when. Of course, this makes it the perfect time for them to hammer me into the bottom of the swamp (which will happen this Wednesday, November 28, 2007).

I spent the day taking care of some minor issues at the SCCA, yelling at some hospital accounting departments where the people are polite but clueless, ordering drugs and medical supplies, and alternating between slight mania and abject fear of the next two weeks.

In 15 minutes I'm going to sneak off to our local Thai restaurant with Ed. They make some incredible fried chicken wings. The Colonel and Popeye could learn a thing or two from the Thais. (The place is called "Thai One On". Yeah, hokey.)

Oh, by the way.....

I sorta forgot to talk about the bone marrow biopsy that happened this past Wednesday. Remember, that's the old "let's put a couple of holes in your hip bones and suck out the juice" pleasantry I'm so fond of.

Well, it went EXACTLY as I wanted it to go. I went in. I took drugs. I walked out with Ed and we went home.

This is how bone marrow biopsies should happen. I'll do it again.

Oh, speaking of drugs. The docs have me on Fentanyl for pain nowdays. What a wonderful drug. No high and no pain. The perfect combination. I actually feel like a person's supposed to feel. No buzz and no misery.

It's really amazing how much pain I endured every day. It's only recognizable now that it's gone. I had grown so used-to the background pain that it became my new norm. I'm SO glad it's gone.

I've actually been waking up in a good mood every morning since starting the Fentanyl. (So good, in fact, that it's been irritating to Ed. He likes to wake up slowly and I've been a bit like Little Mary Sunshine.)

24 hour wee-wee

I have to collect my urine for 24 hours again. Take my word for it, the concept thrills you as much as it thrills me.

I was supposed to start yesterday and finish this morning, but I forgot. (Maybe it was just a mental block.) I guess I need to reschedule the blood test that's supposed to go along with it at "adventure's end".

It's a wonderful little drill:
1) Remove lovely brown 1/2 gallon container from fridge.
2) Open said container.
3) Dangle my little friend into the cold container.
4) Pee.
5) Shake my little friend against the sides of the cold container.
6) Remove my little friend from (freshly warmed / stinky) container.
7) Shake my little friend again.
8) Put my little friend away where he belongs and make sure he's comfortable.
9) Put the top on the stinky-tainer.
10) Put the stinky-tainer back into the fridge.
11) Repeat 1-10 as necessary until 24 hours have passed, then
12) Disguise stinky-tainer as your bag lunch to protect innocent onlookers.
13) Carry stinky-tainer across town. (If public transportation is being used, sit next to an obviously homeless person. This will make most people think the smell is coming from him.)
14) Give to an eager looking lab technician.
15) Smile pleasantly, then turn and run like hell.
16) Go get a blood test.
17) Try not to look at the urine collection technician as you leave the building.

Thanksgiving day.

For those of you who are non-US readers, today is Thanksgiving Day. It's a holiday we celebrate in honor of the bounty provided us.

Usually, this holiday is celebrated with family and food. Most times it involves overindulgence, football on TV, and tall stories from distant uncles. This would be considered a "traditional" Thanksgiving.

In our house, since Ed's not a US citizen, and since I really don't care much about family, Thanksgiving is sometimes spent with friends and sometimes spent alone. This year, we were worse than usual.

I was in Vancouver, Canada being interviewed for a job. Ed played video games at home alone. After I came home, I microwaved some chicken and made some instant mashed potatoes. Some people will think this is horrible, but I think they're missing the point.

We're thankful we have the flexibility to do what we feel like doing. We're thankful we love and trust one another enough to change directions on short notice without disappointment. We're thankful that a microwaved dinner together is worth more than a gourmet meal apart. We're thankful that we're slaying our dragon together. We're thankful we found one another at the perfect place and time. We're thankful it works.

We hope each of you is as lucky as we.

The daily news

Ed and I went to the scheduled conference today. Unfortunately the blood test area was SO backed up we waited an hour and two minutes from check-in time to completion, so we were a bit late for conference. We got our calendar/schedule and we got the doc to agree to allow my brother to be HLA typed. (Big step.)

Tomorrow is another bone marrow sample/biopsy. I'm gonna be knocked out completely for this one. I don't really care if it makes me seem like a wimp...... I don't wanna be here for this one......

The current schedule has me getting Melphalan (bone marrow poison) on the 28th and my transplant on the 30th. Engraftment (acceptance and regrowth of my stem cells) should occur within 14 days (24 at the most). Yeah, that would stretch right up 'til Christmas eve.

(For those "in the know", some Canadians are pestering me to come visit them. I'm actually scheduled to go up there on Thanksgiving Thursday.)

Last night and today.

My gout flared up yesterday. I woke up with joint pain in my left hip, both kness, and both ankles. I was virtually crippled by 9 pm.

This morning I woke up at ~5 am because I had to pee. I found that I could walk gingerly to the bathroom, but the pain never let me get back to sleep. I got up and did my regimen and headed off to the SCCA at 6:45 for my 7:30 blood test.

I got a gammaglobulin infusion and a pamidronate infusion today. I left the SCCA at 2:45. No side effects, no serious reactions. One of the meds they gave me as prophylaxis against an adverse reaction to the gammaglobulin was successful in treating my gout. Yippee.

They gave me a pain script for Fentanyl in a patch. The patch lasts 3 days. We'll see how well it works.

The daily grind

I'm doing this simply for documentation. It might interest some of you to know what the basic overhead is for me every day.

1) Get out of bed.
2) Eat the "breakfast of champions" (a small handful of pills).
3) Start the shower
4) Remove my 'required' T-shirt. (keeps the Hickman catheter from being pulled out)
5) Remove the dressing over my Hickman catheter.
6) Cover my Hickman with a "Showerguard" plastic sheet (supposedly keeps the Hickman dry)
7) Shower, shave, and brush my teeth with 2 different types of toothpaste and 3 different tooth brushes. (really!)
8) Turn off the shower and dry off with a new towel every day (required).
9) Remove the "Showerguard" and dry the area under it. (not really waterproof)
10) Open a pre-packaged dressing kit.
11) Sterilize the area around the Hickman and under the Showerguard location starting from the Hickman entry point and working outward.
12) Place two gauze pads on the Hickman entry point (one under and one over the line).
13) Tape these gauze pads to my chest using alternating tape patterns so my skin doesn't disintigrate over time.
14) Remove my infusion (hydration) bag from the refrigerator.
15) Warm the bag under hot running water for 10-15 minutes.
16) Program the infusion pump.
17) Place the warmed infusion bag in the backpack.
18) Install a pre-packaged tubing kit on the hydration bag.
19) Prime the line(s) of the tubing kit (including clearing bubbles from the lines).
20) Put a new battery in the infusion pump.
21) Program the infusion pump.
22) Connect the primed tubing to my Hickman catheter after cleaning the tip with alcohol.
23) Connect the pump body of the tubing kit to the pump.
24) Finish programming the pump.
25) Check everything and start the pump.
26) Carry "Wheezy" around for 4 hours.
27) Undo the tubing (disconnect).
28) Clear both lines of the Hickman catheter with a saline flush followed by a heparin flush.
29) Resume my day.

I've been asked why I don't combine #7 and #15 by warming the bag in the shower. The simple answer is that the ports of the bag need to stay clean and dry. It's not practical in the shower.

Return of the prodigal.....

Ok, I'm back. I went to Dallas for a few days to get some things out of the way. I spent a bit of time with my brother and his hubby, some with my motorcycle posse at the TSBA, some with TSBA members who are closer than average, and had one dinner with my mom, sister, and niece. The whole trip was quite nice. Only about 3 hours of it sucked, so I consider it a 'good thing'. I slew some dragons and got some badly needed rest in the process.

Ed and I gave a pretty nice digital camera package to our niece. I hope she puts it to good use.

Anyway, I'm returning my seatback to its full upright position. My tray table is locked.

I'm unable to take your call at this time.

Well, I'm done for this week. Nothing going on. The SCCA has me off next week completely. Until November 19, you won't be reading anything from me unless something odd happens.

"I'm sorry. I'm unable to take your phone call at this time. Please leave a message and I'll get back to you as soon as I can."

New birthday.

It's common for transplant patients to label their transplant day as their "second birthday". Apparently mine will be November 29th. This caused me to have a funny thought.

What if the astrological sign for my new birthday (Sagittarius) isn't compatible with my regular birthday (Gemini)?

Don't misunderstand. I'm not a follower of astrology. I was just curious in a "wouldn't it be funny" sort of way.

Well, it turns out that my Sagittarius and my Gemini sides will get along just fine as long as we don't become emotionally involved. (Yeah, there are a lot of different ways to consider that.)

Truth is, I'm not schizophrenic enough to worry about it.

Vacation!

I went to the SCCA today to get my usual blood test. I also made plans with them to go on vacation. I've had this miserable "job" for about 14 months without a day off, so I'm gonna spend 4 days back in Dallas next week.

There are a couple of tests they wanted, but they'll wait until I get back.

The plan?

I touched base with my team this morning after my blood draw. It seems that the schedule looks like I'll be getting melphalan on Nov 27 and will get the transplant on Nov 29.

I have a consultation on Friday, so I'll keep you all posted.

A productive day.

I started my day at the SCCA at 9:00 am with a blood test. It was followed by a platelet transfusion and a "G" shot.

Then came the surprise. I was told at 11:30 that my noon apheresis (harvest) had been cancelled. I went NUTS! WTF? So I went to my "team" and asked a few questions. Turned out that somebody knocked me off the list by accident, and that I was back on schedule. I'm glad I raised a little hell. What do passive patients do?

Anyway, apheresis happened as it was supposed to. It was followed by 2 units of blood (again), making something like 9 units of blood since this thing started.

I got finished at 7:00 pm this evening. Ten hours of being a patient patient. (Well, not always patient, but always a patient.)

So do you wanna hear the good news? The SCCA apparently has two different sizes of apheresis collections. One is obviously smaller than the other. They did the little one on me today so they could do another little one tomorrow. See, my hematocrit was 29 and they require a 30, so they were gonna fudge a little and do it in two sittings. They knew my late-day blood transfusions would get the number over 30.

Anyway, they wanted to do the apheresis in two parts because they need to collect at least 10 million stem cells and it usually takes two 'smalls' to get 10 million.

One side note: My doc suggested that the melphalan treatment I got before the "G" shots might reduce the number of stem cells to 6 million (maybe). She just wanted me to be prepared for only collecting enough cells for one auto transplant.

Well, the end of the day turned out to be quite good. Tests showed I produced (and they collected) 10.6 million cells from a 'small' apheresis.

Yes, that's a stunning result. No more apheresis. No more "G" injections. I have a blood test tomorrow at 9 am. It's the only thing on my schedule.

I'm relieved.

THE call.

I just got THE call. Turns out my CD34 count is 35 and they're only looking for 10, so I get harvested tomorrow at noon!

I'm pretty emotional right now.

A call.

Well, I got a call, but it wasn't THE call. To be honest, this call sorta pissed me off.

It seems they won't do a harvest unless my platelets are above 50. Yesterday they were 28. Today they're 18. Why the hell didn't they schedule a platelet transfusion for today along with the RBCs?

So, tomorrow at 9:30, I get platelets and another pair of "G" shots.
Whoop-de-freaking-do.

Do I sound anxious?

Another Monday rolls around.

The SCCA started at 10:45 today - blood tests including a bunch of odd ones like a CD34 test and a test to see if myeloma cells are coursing through my bloodstream.

Then there was the usual "G" shots and vitals, with the usual questions. You know, "Have you died within the last 24 hours?", "Has there been any unusual bleeding since we thinned your blood so far that it looks like water?", and "Do you feel dizzy when you stand up?".

Now, these may seem like inane questions, but I dilligently answer every one. So in case you're curious, here are my responses.

"Not that I'm aware of. Is there something you need to tell me?"
"Just the bloody eye and the Petechia. Besides that there have been no gushers."
"Not any more than I am the rest of the time."
Nobody ever asks how dizzy I am the rest of the time.

Anyway, I'm back at home, hooked up to my little black girlfriend "Wheezy" for a nice liter of fluids. Waiting for the phone call that drops another shoe. Will it be the right shoe, or the wrong shoe?

I'll let you know.

Transfusion on Monday

I just went to the SCCA for a late-afternoon blood typing. Now I know I get 1 unit of blood tomorrow at noon. Gotta bring something to do. 4 hours in the chair.

Return engagement

Gotta go back to the SCCA today. They need to type my blood. Even though it's been done before, there's some sort of regulation that the typing has to be done within 3 days of a transfusion.

Home again, home again, jiggity-jig

Back from the SCCA again. Good news!

WBC count was 0.4 yesterday and it's 1.37 today! Basically this means I'm coming out of neutropenia rapidly. The nurse (who spoke with the oncologist) said they'd be looking at tomorrow's numbers and might be calling me in the afternoon for a Tuesday harvest!

I also bumped into the oncologist in the hall and she confirmed this, but also advised they'd be ensuring that there were no "bad cells" in the blood. I take this to mean that there should be no circulating myeloma cells in the blood, as there have been in the past.

So, I might get my callback tomorrow! Cool!

Petechia

Yeah, it's 1:00 am and I've been up watching TV. Bad boy.

But here's the news. I took off my pants and shirt with the lights on. I have petechia (pronounced pet eek ee ah) all over my body.

What are they? They're tiny little blood vessel hemorrhages everywhere on my skin (primarily on the legs due to the increased pressure of gravity). They're caused by my low blood counts. Basically, if there aren't enough red blood cells in your blood, you spontaneously bleed. Add the petechia to the bloody eye, and my counts are probably about as low as they'll let me go without a transfusion. We'll see tomorrow at my appointment at 8:30 am.

Will advise.

Saturday

The usual blood tests and "G" shots.

Most of the numbers haven't changed significantly, but the WBC count dropped about 25% meaning that my marrow hasn't started to grow back yet. Basically this means I'm not gonna get the call for harvest any time really soon.

New schedule

Back again. Blood numbers remain neutropenic. Hematocrit is 29 and that's below their minimum level for harvest. Thus, we suspect that I'll be getting another transfusion immediately before harvest.

The schedule has me on "G" every day until next Thursday. However, I've been advised that when the numbers are right, they'll just pull the trigger and schedule me for harvest the next day.

So, I could stay on "G" until Thursday or I could get my "summons" tomorrow. Who knows!

(I've been warned that the transfusion and the harvest can take up to 10 hours. I'm supposed to bring 'something to do'.)

November 1 report

Just got back from the SCCA again. Blood draw, blood counts, "G" injections. Pretty normal day. Same routine tomorrow. Counts are continuing downward. Immune system is even less than yesterday.

They're busting my hump about my fluid intake. I get to keep records now.

Surprise!

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?"
"Sure."
"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.

Immunity

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.

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.

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.......

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.

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.

Nite-nite.

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.

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.

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 http://www.marrow.org 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.

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.

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.

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.

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.

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.)

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.

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!

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.

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.

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.

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.

Tomorrow

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.

Decision

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.

Options?

I have two oncologists. One is my treating oncologist, Dr. B. The second is a referring oncologist, Dr. A. We picked these two docs for a reason.

Dr. B. is a man with a hammer. His hammer is named "transplant".

Dr. A. is a man with a paintbrush. His paintbrush is named "maintenance".

And so, I find myself digesting lots and lots of new information because Dr. A. has suggested that my multiple myeloma can be controlled by chemo now that my numbers are where we'd like them to be.

Don't misunderstand. Both docs are recommending that we do the stem cell harvest on Oct 9. There's been no change in that part of the plan. Logically we're at a point of no return for harvest. It's gonna happen.

But the new info suggests that I have 3 options post harvest.
1) Get the transplant immediately post harvest.
2) Get the transplant at some point more than 30 days post harvest.
3) Don't get a transplant and try to maintain the correct blood levels thru a maintenance level of chemo 'forever'.

Maintenance chemo would be via a drug called RevLimid. It's a derivative / cleaned up version of Thalmid (Thalidomide). It supposedly has fewer side effects than Thalmid. Dexamethasome (steroids) may also be involved. This worries me. Anyone who's read this blog knows how I reacted to Thalmid. Similarly, I'm no great fan of Dex (steroids). So, my options boil down to:

1) Transplant
2) Same-old-same-old drugs.

Now this part is gonna sound confusing, but if 1 or 2 aren't effective, then I have to go back to either 1 or 2 again. Yeah, put that in your pipe and smoke it.........

Left turn in Hell.

I'm sitting here shivering uncontrollably with the house temp at 74F and I have a jacket on. Obviously the chills aren't caused by being cold.

Dexamethasone is the culprit. I'm supposed to take my "Batpills" tomorrow morning so I can turn back into a functioning human again. They always make me feel normal for about 48 hours. The other 5 days a week are spent in various stages of having my Batman suit stripped from me while being pummelled by 2x4's. You have no idea how depressing it is to go to bed at night feeling bad.....knowing that even after a night's rest you'll feel worse tomorrow. It doesn't help to know the pattern will continue for the next 5 days.

Of course, there's always hope. When Thursdays come around I can turn back into Batman and help save the world.

Except for tomorrow. The Dex is finished. No more. Not until I'm told I can. Blessing? Yes. Fun? No. Within a week, my system should return to just being plain old Andre. (That's a good thing for me. Dunno if it's a good thing for you.)

I also won't take any more Velcade (the nasty 'real chemo' stuff). I forgot to ask about the Pamidronate infusions, but they only happen once a month and I know I have none scheduled.

So, essentially, I'm completely off the old chemo plan. No Mo CheMo.

You didn't really believe that did you? Remember, the title is "Left turn in Hell."

What's really going to happen is that the doc is sending me upstairs to the 'harvest' center so they can do a complete eval of my current condition. That will involve:

1) Looking at today's numbers, which won't be back until tomorrow.
2) Generating some more numbers of their own.
3) Doing another bone marrow sample. (Bore a hole in your hip and suck marrow from it. Wasn't too fun the first time.)
4) Advising if we should go through with a harvest.
5) Putting in another central line (apheresis catheter) in my chest.
6) Dosing me up with some stuff that will make my bones hurt all the time while the marrow creates all kinds of stem cells. (Three days down before the pain even begins.)
7) Harvest of the stem cells IF this particular stuff works correctly in my body.
8) Change of harvest chemo to something truly nasty if the 'not so nasty' stuff doesn't work.
9) Harvest, collection, and separation of stem cells from the garbage.

And if all the numbers look good......... We'll move from there to transplant. That's a hard right turn into the central part of hell. It'll take me out of action for at least a month. It's "the bad time".

So, it's moving forward finally, but I sorta feel like soldier who's been dealing with IEDs all day on his way to a major battle in a nearby town. Things are bad. They're gonna change. They'll get worse. Eventually everything will be better.

Another bad weekend.

Holy Moley..... It's another bad weekend for the steroid crash. Flu-like symptoms as usual. I feel like somebody's been beating me with 2x4s.

The real problem is that I'm starting to feel like this every weekend. That means my body is getting used to the cycle and reacting to the 'roids in a way that's not fun.

Sorry I'm not being witty. I really feel BAD.

Happy freaking anniversary

Today, September 13, 2007, is the first anniversary of the official diagnosis of Multiple Myeloma.

Positives: I'm still alive.
Negatives: Mengele lives in oncology centers. Read below.

Right now I'm drinking Makers Mark (a gift from my bro and his partner). We're having a party. (NOT!)

Last day of this cycle.

On Thursday I took my 'roids and got a pamidronate infusion and a Velcade infusion. Because of the 'roids, I felt pretty good on Thursday and Friday. I got a lot of work done.

But on Saturday, I started to feel kinda run-down. Sunday morning involved another Velcade infusion and I really went in the dumps. I slept from 4pm to 8am. Yeah, 16 hours.

Monday was HORRIBLE. Bone pain, muscle cramps, diarrhea (99% pure water). I spent most of the day in bed. Now it's Tuesday and I'm still dealing with everything from Monday at about 80%.

I hope it's the Velcade that causes this.... because I'll have a 2 week reprieve until it starts again.

Doggie Dookie

It's confirmed. Velcade and 'roids make me feel like hammered doggie dookie.

I do a Velcade infusion on Thursdays, then I do my Batman steroids on Friday morning. I feel like a million bucks on Friday and Saturday, and then on Sunday mornings I get another Velcade infusion.

On Sunday afternoon, I start to feel pretty bad. Part of it is the Velcade and part of it seems to be the steroid crash. I'm bloated, swollen, and my insides feel like I've been punched...... and then it gets a bit worse. Sleeping is difficult and the problem continues all the way thru Monday.

On Sundays and Mondays, all kinds of colorful stuff comes out my nose.

Hopefully Tuesday (tomorrow) will be OK. I have lotsa work to do. Gotta try to make a buck or three.

The ABC's of doctor selection.

First, let me say that Ed and I are apparently "famous" in Seattle oncology circles. It's odd, but every oncologist I've talked to has heard of my situation. Apparently I was used as an example at a recent conference and everyone in town has some familiarity with me / us.

Certainly this isn't something to which one should aspire. Nobody got rich being a famous patient. However, since we find ourselves in this odd little predicament, it's certainly advantageous. Seattle is a big center for cancer research and treatment and this puts lots of brain power at our disposal.

So anyway, because of the job / insurance / coverage situation, we've been looking for new doctors. My previous oncologist was Dr. C., Dr. C. went to Dr. A. to talk about a peripheral issue, so now I see Dr. A. for that. My new oncologist is Dr. B. so I literally have Drs. A, B, and C (except C is really an X).

But the trouble is that I also saw a Dr S. at the local county hospital. Dr. S. is a good guy. He's called me personally a couple of times from his cell phone to ask questions and make recommendations. He's direct and we communicate well. He seems to actually care. I LIKE THE GUY.

However, he works in the county facility. YUCK! Sorry, but I have an objection to sitting in the waiting room with meth and crack junkies who can't wait to get their scripts refilled. I met with Dr. S. some 40 minutes late because of poor time management on the part of the facility. Quite frankly, Dr. S. seems to be the only one who gives a crap. Everyone else seems to simply tolerate what ever comes in the door.

So now I have to fire a good doctor. I honestly hope it won't contribute to his eventual dissatisfaction with the situation at that facility. It has to be frustrating to go through all that schooling....to dedicate yourself to a cause.... and have to treat patients in a setting like that.

"You Just Wait"

Ahhh, Velcade. The wonder drug.

I'll start by reminding my readers that I didn't think Velcade was giving me any side effects. It didn't then. It does now. I'm on round 3 and I have another round to go.

Velcade is a proteasome inhibitor. As my hubby Ed, the biologist, explained it to me, this means that a vital cell activity is squelched by Velcade.

See, cells rely on the creation of amino acids (proteins). When they're created, some of those proteins are created incorrectly and they need to be identified and chopped into tiny pieces so the cell can dispose of them. If they're not destroyed, the cell eventually dies because these defective proteins build up and kill it.

So what Velcade does is suppress the action of the proteasome, which is the little chopper that seeks and destroys the bad proteins.

Ok, so why would you suppress the action of a necessary defense system? Simple: It is presumed that the cancer cells will die before the regular cells do. So, give the inhibitor until the cancer cells die and then let the regular cells go back to work by eliminating the drug.

The whole thing makes some sort of macabre sense, and it DOES seem to be working, but there are side effects.

See, when I started the drug, my regular cells seemed to be working fine. The proteasomes were working. The drug shut them down, but the cells didn't start filling up with bad proteins immediately. It took time.......

A direct parallel can be drawn with the New York City Sanitation strike some time ago. The garbage trucks stopped rolling and nobody cared. There was no trash on the street on the first day of the strike. There was no trash on the street on the second day either. Then trash started to appear on the street. And more, and more, and more until the sidewalks were full of stinky piles of detritus. Velcade is like that. You and the cells don't really notice...... until the cells get full of garbage proteins and cell death starts. Until you start to feel like hammered dog-doo. Until you discover you have the endurance of a fruit fly.

Don't get me wrong. It's not completely debilitating. It makes me feel lousy and it seems to make me susceptible to all kinds of peripheral illnesses / effects. BUT, it's one hella lot better than Thalidomide.

Anyway, I'll return you to your regular programming.

Blood test numbers

The infection seems to be gone. They've taken me off the antibiotics and removed my midline (IV). However, they've been taking blood every time I go anywhere and I'm noticing a trend. My RBC, Hematocrit, and Hemoglobin counts are slowly wandering downward. This means I'm becoming mildly anemic.

Nobody's alarmed yet, so we'll just keep an eye on it for a while. Heck, the numbers might be going down just because of the amount of blood they've been drawing.

Three doctor appointments and a trip to the airport tomorrow. Yipee.

Infection!

On July 30, at about 5 or 6 pm, I realized that my apheresis catheter area was beginning to hurt a bit. It's always itched, but the pain was something new. It bothered me a bit, but since I was in the middle of inspecting, recommending, buying and riding a new motorcycle for a friend, I sorta ignored it until I got done. You know how it is, the job at hand is always more important than a little discomfort.

Well, when I finally got home, I looked at the site and it was pretty ugly. Swelling, redness, pain...... all the signs of an infection.

Now, if you look at the picture in a previous post, you'll see what the cath looks like. You can imagine that whole area, from the entrance to the upper gauze pad being red and swollen.

Ed and I aren't stupid. We went to the Urgent Care facility and finally saw a doc at about 10pm. Blood tests, bacterial tests, antibiotic infusion. "Please come back and see us in the morning."

So I did. I felt like rolled up doggie dookie! They poked, they prodded, they gave me more antibiotics by infusion. Then I was told the catheter had to come out. No questions, no argument. It was coming out. I didn't complain or worry about the cost of getting a new one when harvest time comes..... This infection had the potential to kill me quickly in spite of everything we'd already been through.

So, I had a minor surgical procedure that removed the source of the infection. Local anesthetic wasn't terribly helpful because most of the pain was actually in the chest muscles, not the skin, so it was unpleasant to say the least.

Ok, so I got home, crashed like an old hound, and slept through the call the hospital gave me about a little "problem". It seems they took some samples from the cath and my blood tests to confirm I have a staph infection in my blood stream.

This is NOT a good thing. Particularly since my immune system is compromized by the Multiple Myeloma.

"Please come back in and get some more antibiotics and we'll teach you how to administer your own at home."

Ok, should be no big deal, right? Wrong!

Well, now I have a different kind of line. They're calling it "long term" or "semi-permanent". It's basically a specialized IV line that goes in the big vein in my left arm.

And now, every 8 hours I get to give myself an infusion of a saline flush that's followed by 20cc of Cefazolin I infuse over a period of 10 minutes (by hand at 2cc per minute), and that's followed up by another saline flush.

Yup, every 8 hours. FOR THE NEXT 30 FREAKING DAYS!

Makes me understand the saying: "If the disease doesn't kill you, the healthcare system might!"

I'm SO TIRED of being sick. We're right at the first anniversary of symptoms, and at 11 months since diagnosis. I didn't know they made roller coasters this long.