Velcade

As of this morning, I'm done with Round One of my Velcade infusions. This has been accompanied by light Dexamethasone dosing. The Velcade stops for a couple of weeks, but the Dex continues.

On August 6th I have an appointment to get new blood tests. Then on the 8th I meet with my new oncologist. We'll be discussing some new health status information that's recently reared its ugly head.

I'll keep you all posted.

The good, the bad, and the ugly.

Obviously not much is going on medically right now. I'm sorta playing the waiting game. Here's an update on the minutiae of my treatment.

I'm doing Velcade by infusion twice a week. I'm also doing 40 mg of Dexamethasone orally once a week. The Velcade is infused thru the catheter over a period of 3 seconds.... obviously not a long infusion. It's effect on me is minimal. It can reportedly cause nausea and some peripheral neuropathy, but none of that has happened yet. The Dex is 1/4 of my prior dose, so the side effects are greatly reduced.

I'm having shoulder pain pretty regularly and I'm retaining a lot of fluids. They're not major issues.

Angry / depressed.

I went to see my new oncologist today. Based on the actions of my previous oncologist, it's been STRONGLY recommended that I not harvest stem cells yet.

Basically, that means two more months of chemo and a review of my situation.

I'm angry at my previous oncologist, but I trust the new guy because his thoughts are exactly in line with what Ed was starting to observe in my blood counts.

The setback has me more depressed than anything..... I'm not a happy camper. Back on psycho drugs again, just as I was starting to feel human again.

Bummed.

Apheresis Catheter

Yesterday at 1 pm I showed up at the medical facility for this month's adventure. It was an apheresis catheter (sometimes spelled aphoresis catheter).

Here's the deal. There is a need to move lots and lots of fluids in and out of my blood stream. Standard I.V. rigs wouldn't handle the volumes in a reasonable amount of time, so they insert venous catheters into people to solve the problem.

Part one was the prep. It consisted primarily of an infusion of saline and an antibiotic to help prevent infection. My nurse was an absolute dingbat.... forgetting things, dropping things, tripping over things. Eventually she got the antibiotics and hung them on the infusion rig.

At 2:10 they came to transport me into surgery. That's when we discovered she never opened the clamp on the antibiotics. Apparently the patient has to double check everything everyone does.

So they put me on the table (actually an angiography machine) and started draping the surgical area. Nope, no lookie-loos for me.

They made an incision in my right internal jugular vein (in my neck just above the collar bone). They inserted a tube (catheter) down the jugular to a point near my heart. Then they "tunneled" (actually just crammed) the remaining part of the catheter under the skin of my chest to a point about 2-3 inches above my right nipple. At this point, they created an exit site where the catheter comes out of my chest. To this, they attached a two headed hydra looking thing that allows fluids to enter and exit on demand.

Figuratively speaking, I have a bung and a tap now. Need blood? Sure, step right up to my nipple here........

Well heck, I guess I have four nipples now. Step up to the plastic ones.....

Were there any problems beside the antibiotic one? SURE! How would it be possible to have a procedure done without problems?!?!

See, when they put in the catheter, they discovered it was too long and it started giving me PVCs (Premature Ventricular Contractions). Basically, it was causing an irregular heart beat. This was not a good thing.

So with the danglies dangling, they called the chief of oncology to ask permission to change catheter type and length. He eventually consented and the procedure moved forward.

Did I mention I was awake for this whole thing? Can you say OUCHIES ?!?!

Ok, so it's in. Now I have a paper shopping bag full of supplies to clean it and dress it and put make-up on it. I'm kidding. I don't actually put make-up on it, but I do get to clear the lines with Heparin every day.

The whole site was pretty swollen last night. It hurt to turn my head and it feels very weird to lift my arms.... the plastic tube just isn't as flexible as my body is..... There's an odd pulling/stretching/kinking feeling when I move. Sleep is pretty shallow at this point.

Oh, so what did we do afterward? We went to the movies to see Transformers. Two Tylenol work wonders.

Here's a pic. Click it to make it larger if you want.

Transition

In accordance with my usual schedule, "standard" chemo stopped this last Monday. (June 11) Hopefully it's gone for good. I got my monthly blood tests done yesterday with the expected results. My "M spike" has stabilized and all my blood numbers appear to be "normal". (They were pretty much normal last month too, but we elected to push the envelope a bit and stay on Dex one more time.)

And so, the numbers earned me a phone call and a couple of emails today. It's time for a drastic change. On July 9th, they'll insert an apheresis catheter in my chest (a port) and I'll begin giving myself GCSF (a growth factor) by injection twice a day.

What's gonna happen? GCSF makes bone marrow create stem cells. It also forces those stem cells into the bloodstream for collection. I expect to be in considerable pain for the duration of the collection because of the stress and strain of production and transfer. I'm not looking forward to it. Bone pain is something very few people ever get to experience.... but imagine being in pain, rather like the pain of a bruise, on every single inch of your skeleton. Movement hurts like hell. Breathing hurts. Doing anything, including just lying there, hurts. No, it's not excruciating, but it never stops. Never.

At the end, they'll collect blood and stem cells from the port. Then they'll seperate the stem cells from the rest of the blood cells they don't need, and then they'll freeze the stem cells for later use.

When it's time for the transplant...... they'll kill all my bone marrow and leave me with no immune system....... and re-infuse the stem cells so they can grow into new bone marrow. That'll be 21 to 45 days of hell. Part of it will be in the hospital (again).

Progress is scary.

Shamu

There's nothing much to report this weekend folks.

Well, there's this weight issue. It's time for me to go on a diet. I've actually gained ~40# since the week after surgery. That was 139# for a low and now I'm hovering around 180. The actual number itself isn't wrong, but with my newly shaped 'chemo corpus', my old 180-190 is very unattractive. And so, it's time to turn around my recent habit of eating like a teen. I gotta get rid of the blubber.

In other news this evening: I still haven't been contacted about getting my chest port installed. I've followed up and expect to hear something early next week. Will advise.

Finally, I want to discuss the old roller coaster. It still exists. The climb and the fall are more reminiscent of a kiddie ride, but the ups and downs still concern me.

Even without the extremes of the past, I find myself wanting to go down when I'm actually going up, and up when I'm going down.

Dexamethasone (Dex) does things FOR me. I like lots of the effects. On the other hand, Dex does things TO me. I don't like those effects. Being off Dex is the literal inverse of being on Dex. The FOR becomes TO and the TO becomes FOR. And so, I constantly find myself wanting to find a space between where UP starts and DOWN ends.

My current chemo schedule allows me to manage my life a bit better. I take Dex on Friday, Saturday, Sunday, and Monday. I'm off Dex on Tuesday, Wednesday and Thursday.

Tuesday and Friday are my good days. One starts the downhill and the other starts the uphill. I feel like crap on Wednesday. Thursday is just sorta slow. Friday is terrific during the day, but by evening I'm so wired I usually stay up and awake until sometime Saturday (maybe Saturday night). Yeah, I've been doing 40 hour days almost every weekend for a while. (Like tonight.)

Sunday? I'm tired but flying. I get stuff done on Sundays. Mondays are a riot.

Don't get me wrong. These effects aren't nearly what they were 6-9 months ago when I was megadosing. But they still exist. They still change me. They still make me crazy. They still burden Ed.

Anyway, enough whining. Good night to you. I'm gonna go downstairs and work on a project.

Oncology visit

I saw my oncologist today. My numbers look good. They're back to being almost as good as they've ever been.

So my doc made the recommendation that we proceed with putting in a central line / chest port. Basically this means he wants to start doing a stem cell harvest so we have some good stuff in the freezer for a transplant.

The procedure is relatively simple and common, but there will be a drug program associated with "forcing" the stem cells out of my marrow and into my blood stream. That part will be interesting.....

When I finally make the decision to do the transplant, there will be a HUGE chemo load placed on me. My doctor expects me to be hospitalized for some part of this period. I'm disinclined to do it during Seattle's wonderful summer months.

Results again. Good news!

I don't have all the numbers back yet..... so it's possible this will change, but today's tests all show I'm back in remission again.

I'll keep you posted.

One day too late.

I just realized I should have gotten my bloodwork done today. Seems my oncology appointment is next Friday, so that means I should have gotten a workup today so the numbers could be ready by next Friday.

Oh well, I guess I'll just go there in the morning and see if it squeezes in.

Now the fun part of the whole chemo schedule is........... I have a track day next Wednesday.... you know, 165 miles an hour on the racetrack, heavy braking, hard turning, wheelies....... and I have to do it without any drugs...... No chemo, no 'roids, no relief. It'll be interesting.

I've never done any track time while I was doing drugs...... but it'll be interesting none-the-less. I wonder if my body still works the same way it used to. I guess it's time to prep the old bod for next week.

Revelation

An interesting phenomenon has popped above the surface in the last couple of weeks. It's neither mental or physical, but rather tangential to the whole cancer / blog / blah-blah routine I've been on for a while.

Apparently I have some talent as a writer.

Now, that may seem an odd statement from your perspective. After all, you're the reader so you've already decided I'm readable. In other words, you may take it for granted that I'm a writer. But from my position on the planet, I'm just a guy who types what he thinks exactly the way he thinks it.

Maybe that makes me a writer.

On the other hand, writers write and I just blog / email / post opinions / converse electronically / share information with my friends and spectators.

And so, cancer seems to have opened a door. Maybe this is an opportunity to realize an unexercised talent. Hmmmmm......... There are about a dozen catchy phrases going through my head right now.......

Something good might come of this.

Strange.

They ran my blood numbers last week immediately after my pamidronate infusion. They came back "strange" in my book.

Poly's were high. Lymphocytes were low. Kappa free light chains were undetectable. What the heck do these mean?

Well, apparently nothing important. They're all OK. I just get wierded-out when they change their SOP and then the results come back oddly.

Now, here's the good/bad side of the news. I'm getting FAT.... Technically that's good, but it's really bad for me..... Gotta get that in check right now. 175# is 35# over my post-surgical weight and 10# under my usual..... but with the body mass changes, I really should be operating at about 165#.

Golly, seems like I'm dealing with pretty minor little issues..... I must be doing OK physically then......

Chemo load

My current chemo load seems to be working adequately. With half the original dose of steroids and complete elimination of Thalidomide, my numbers are still good and I don't go nuts as often as I once did.

Maybe some of that comes from perspective, but I know the change in loading helps. Maybe I'm just growing up.

Denied!

The Hartford has denied my LTD claim. They say my cancer was a pre-existing condition.

Phone calls Monday morning will not be pleasant. Contacting an attorney might happen immediately after.

Three words

I wrote three very powerful words a few days ago. They shocked me. They caused a few moments of introspection. They hurt.

It may seem odd that these three simple words moved me, but the truth is I don't think I've ever said them before. Sure, I've used metaphors and synonyms. I've used descriptive and technical terms. But all these phrases are simple decoys to move conversation along and protect people (mostly myself) from the simple truth.

I have cancer.

There, I said it again. It's official. I have cancer. Me. I'm not living in denial any more. (Hell, I didn't realize I was in denial until about halfway through writing this.)

Relief!

I got a scrip from my doc for Desonide cream. It's a corticosteroid ointment that has already cleared up the itching and flaking. My skin appears to be recovering nicely.

I sorta worry about the warning from the doc and the pharmacist that said "Use sparingly!" What will the side effects be?

Frustrating

Ok, so I was in remission until I went in for surgery. Two months on chemo and I'm virtually in remission again. My numbers are so close to normal that I could probably retest next week and be on the mark. I'm gonna see my oncologist on Friday. I'll need scheduling answers on my change in chemo for stem cell creation and harvest, then insertion of the port to my chest for the harvest. The fun part is that I need to complete these things before I lose coverage with my employer. Scheduling becomes critical.

The thing I'm frustrated by is my relatively new skin condition. Sahara-esque would be an understatement. Half my face, head, and neck is red from peeling off. The other half is coming off in 1/8 inch flakes. Moisturizing only glues the flakes to my face. They seem to continue to develop underneath the layer of moisturizer. I'm using moisturizers that contain no alcohol and my face still burns when I put the stuff on.

In any case, my face either itches or burns constantly....... Yeah, I know this is a relatively minor issue when compared with some of the other stuff I've posted, but damn, when are the new side effects going to stop showing up? It's not like I give one up and get a new one. They're all still here.

The weekly report.

It's Sunday morning and I'm feeling pretty average today. There's still a problem with my skin falling off my head and face, and my tinea cruris (look it up) is irritating. Basically, it looks like my skin is suffering some long term effects of the treatment.

As far as the skin is concerned, it makes for a very 'red' countenance as thin/bare spots are exposed. My skin was actually getting better last week when I was shaving every day. Now that I'm not again, the flakiness is returning. I'll start shaving again tomorrow and see what the result is.

I had blood tests done on Thursday of last week. Unfortunately the lab is a bit slow this week so I don't have full results for today's blog. I'll keep you posted.

NORM!

My life is establishing a new NORMal. It's not the same as it once was, but the new life is my normal life. Steroids make me crazy. Thalidomide makes me stoned and stupid. Boredom makes me eat.

Physically, I'm doing decently. The surgery is healing / has healed acceptably. My insides seem to work again. I can generally eat almost anything I feel like eating. Muscle tone is returning gradually and I'm gaining some strength and endurance.

I just wish I could do something about my brain. Excitable stoners are hard to deal with and virtually impossible to employ. I don't know how Ed does it.

Weekly update

Yeah, it's been a week again. I guess that means this whole thing is beginning to be an integral part of regular life.

The stomach surgery has obviously worked fairly well. My weight is back up to about 160, which is 20# more than my post-surgical weight. Some of the weight is even in my arms and legs because of a mild exercise program I've put myself on. I'm still getting torso fat, but my face is filling out normally and I look less like a beetle than I did some time ago.

Chemo loads are half of what they were during the initial phases. Five 4 mg pills now instead of ten. I'm still a hyperemotional mess, but I don't buzz nearly as much as I once did. Poor control of finer muscle movements is still common. I drop stuff a lot if I try to carry several items at a time. Hiccups have returned during chemo loading. Mostly that comes from eating like a pig. I do that when I'm bored.

In any case, I feel physically pretty good. Emotionally, I'm a complete useless mess.

I'll survive.

Perception

I came to the realization this afternoon that I'm getting used to having the Big C. It's finally become a part of me. One of little accord. Sorta like having a big nose, joints that don't work from racing, or pains of old age. They're there and I have to live with them. The Big C is there and I have to live with it. C'est la vie.

Interesting stuff

Ok, so we saw the oncologist on Friday. Seems my numbers are down based on my improving intestinal situation and serious application of Thalidomide that makes me stumble, stagger, sleep forever, and gives me dry skin and a rash so bad it appears to snow when I walk. Love the stuff. NOT!

Anyway, the surgeon blessed me to get steroids again. This time I'm only doing half the dose I was doing before. 20 mg per day on the previously established schedule. Dunno what the diff is between the 40 mg and the 20 mg, because either dose makes me an emotional mess. As Ed mentioned to the doctor, a single pill moves me 80 miles, but 10 of them only moves me 100 miles. Anyway, I'm calling the Pope about Ed's sainthood.

Now, here's the fun stuff. I got a letter from my boss about my job at GHC. Seems that due to my indeterminate return date, she has decided to reduce me to TPT (temporary part time). Basically that means I lose all my health benefits at the end of April. I won't make any comments about self-serving divisiveness, but some things should be obvious.

Ed and I went to my office to turn in my laptop, cell phone, and badge. We cleaned out my office and I wandered over to the other building to talk to the 'job center' people. They directed me to personnel via telephone and I apparently set a small avalanche in motion. See, it appears that my application for LTD has headed off my boss's end-around. Apparently they can't (or won't) reduce my status while the application is still pending, and personnel sorta suggested that "undergoing treatment for incurable cancer" might qualify me for LTD. A small part of me wanted to put my stuff back in my office and get my gear back.

Regardless, the current treatment plan calls for me to get my blood numbers back into the zone of excellence again so we can start harvesting stem cells. If I'm on LTD, I'll get the autologous transplant during that time. If the LTD application is denied and I have to go back to work, they'll freeze the cells and I'll get the transplant when it's convenient. Either way works for me, but the latter means fairly continuous chemo treatments until the transplant. Not fun, but then very little of this is.

Financial front...

Well kids, it looks like the paychecks have stopped. I got one last Friday for a little over $700 bucks insead of the usual. I guess turning in disability paperwork sorta triggers that kinda reaction. C'est la vie.

No worries

Some of you worry if I don't post something here every day or two. Well, most of the time I don't post simply because there's not much to report. Life goes on, boring as it is lately.

In response to some of the comments made recently..... Normal is always normal. What I'm going thru now is normal for now. I seriously doubt there will ever be a time when my future normal will ever be the same as my past normal. Until then, I'm enduring my present normal.

My memory / self image still has me hunting down spare wheels for my R1. My ego still tells me I'm a fast guy who will be doing trackdays this summer. My ego still tells me I could start teaching race school here. Then reality sets in and I have to consider selling the bike. Normal is different.

The whole motorcycle thing is kind of a big deal for me. For many years I was a racer. When I retired I became an ex-racer, but I could still teach and I was still a motorcyclist. I've never wanted to be one of those guys whose life was all in the past. I always wanted to be a guy who was still "doing it", whatever it was. (I've always thought that guys who said "I used to" were losers in some small way.) Now I'm faced with the possibility that I'll have to become an ex-motorcyclist. Now I might have to say "I used to". That doesn't sit well with me.

All in all, I know I'm getting better physically. I still have considerable weakness in my arms and legs. Hell, I can barely climb onto a bench - a whopping 20 inch rise. My weight is going back up. Obviously I'm able to eat better nowdays. I've gained about 15# since the surgery. Heck, maybe that's why I can't get up on a bench...... too much to lift. Eating from boredom is the cause / curse. I need to find things to occupy my head and hands.

Another doctor visit.

The surgical doc gave me a clean bill of health today. I'm apparently healing fairly normally. He wants me to keep from doing any situps (including getting out of bed without assistance) and I'm not allowed to lift more than 10#. I think he's being overcautious, but I'll behave.

On the other hand, my oncologist declared me disabled for work indefinitely due to chemo and the reactions thereto. I wonder how the office is going to take it. I'll keep you posted.

Better

Technically, I'm getting better. I now have enough energy to do light duty things for almost an hour without wanting to pass out and die. I can even stay awake for 16 straight hours. All these are an improvement. Can I function at work? Hell no. The thalidomide makes me brainless without the benefit of the steroid lift. The steroids are being prohibited because they inhibit healing and hide problems. (Which is why I had to have surgery.)

Ed made a CD with all the pics he's taken of me since the surgery. The thirty stitch belly is pretty interesting, but I won't share it with you. I heard enough whining about the overhead shot "Christmas card" pics. Somehow I doubt you want to see several inches of staples, blood, and bruises.

In any case, elimination is returning to normal. It's something I can control and it's relatively painless nowdays. All in all, surgery was a success.

Now my oncologist wants to get my numbers back in the "remission" column so we can harvest stem cells, then kill my bone marrow and transplant my stem cells back.

THAT is gonna be hell.

Two docs, one day.

I saw my surgeon and my oncologist today.

Surgeon - Healing seems to be quite normal and progressing well. He's taking me off antibiotics. I see him again on the 20th. Staples were removed and now I'm just taped together.

He explained that he removed about 9-10 inches of my intestine. It was attached to the surrounding tissue so severely that he described "I had to carve it out of there". Apparently he thought it was cancerous, but a biopsy showed it to be benign.

Oncologist - Not good news. I'm going back on chemo because my protein numbers are back up BIG TIME. He wants to get a reading and an improvement ASAP so that we can do a harvest and a transplant ASAP.

Basically, I'm going to have to go on long term disability. Between surgical recovery and the chemo/transplant, I won't be able to work a day until about September or longer. (Purely a guestimate on my part.)

I'll keep you posted on how that goes.

My new Christmas card pic.

Progress

The nurse came in this morning and removed the tube that went from my stomach, thru my nose, and up to the drainage bottle. I'm relieved, but removing that thing was probably the 2nd most disgusting thing I've ever done. Later, the doctor removed the dressing that covered Boston's Big Dig. Thirty staples hold the skin together. Yeah, 30!

Regardless, I feel better today than I did 2 weeks ago. That's an improvement.

Update from Ed

This is Ed writing in behalf of Andre. He is now back in his hospital room recovering from the surgery. Everything went well. There was no need for a colostomy (just a resection). Just to let y'all know of the ordeal he went through, here’s a recap of Thursday. From 12:01 am Thursday, he was not allowed to drink or eat anything. Seventeen hours later (around 5 pm), they wheeled him out of his room to the surgery ward. According to my new friend Kirk who mans VM's surgery waiting room, Andre was on the table at 7 pm. The surgery lasted until 9:30 pm. At 10:40 pm, he was back in his suite with tubes sticking out everywhere. And now at 1:10 am Friday, he’s telling me to write this email. Again, everything is okay. Thanks for keeping him in your thoughts.

Here's the deal....

Ok, it's Tuesday. I've been in Virginia Mason Hospital since last Friday afternoon. A total of nine docs are working on this little situation I have.

The solution? They're going to remove and resect my sigmoid colon on Thursday. It's gonna leave a scar!

Weekend report

I checked myself in to Virginia Mason Hospital this past Friday on the advice of my PCP. I hit the ER at about 3pm and finally got a room at about 9pm. Whatever.... stuff happens.

So I've been sitting here for 48 hours in an ortho hospital room (basically a private room) and they've been pumping me full of antibiotics and gluco-saline solutions. They did a CT with contrast in lots of wonderful variations. They've checked my blood and my poop and my urine and my vitals about 17,000 times.

Results? "Well, we pretty much think you might possibly have what you said you had when you walked in the door."

Anyway, the antibiotics aren't working and the pain isn't subsiding and they might consider the possibility of maybe thinking about potentially doing another CT tomorrow.

Decisions, decisions, decisions....... they don't wanna make any.

Physician, heal thyself.

Ok, the terrific results of my Monday adventure with the gastroenterologist: He sent me to 'urgent care' to get some tests done. More blood work, more Xrays, wonderful brunch of barium (berry flavor!), then a CT scan.

Results? Same as before - "Yes, there is an infection but the results are indeterminate."

Thanks a freaking lot, doc! I knew that when I walked in. I told you that when I walked in. I had to spend SEVEN hours here for you to tell me you agree with me?

So what decision was made? Basically, 'well, we know what we're doing isn't working, but you're not getting any worse, so keep doing what's not working and we'll give you some morphine so you wanna sleep all the time and won't give a shit if you feel bad. Call us in a week if it's the same.'

No kidding. WTF is up with gastroenterologists? Do indecisive procrastinators all choose this as a specialty? There has to be some good reason people tolerate poo.... Sorry, I'm a bit frustrated......

Tomorrow, tomorrow......

Tomorrow morning I see a gastroenterologist to figure out why I'm in such pain. My lower GI is absolutely killing me and no amount of antibiotics is making it go away. I have no energy, no sense of motivation, not even a willingness to talk.... It just HURTS.

Wanna know how badly it hurts? So badly I've taken 1/2 tab of Dex (my evil steroid) every day since Friday. It keeps the inflamation down and reduces the pain. Yeah, I hate the 'roids, but I hate the pain even worse.

Hopefully tomorrow won't be a "Hmmmm...." session with the gastro. I've been thru all the tests, dammit! I want some action! This CANNOT go on for a couple of weeks while he rediscovers what's already been discovered.

The fun of it all.

You're not gonna believe this, but the steroids have been hiding a pretty serious infection in my lower GI tract. I've been sick for the past several days. Is that ironic, or is life really unfair sometimes?

Looks like maybe we have it under control.

Free at last! Free at last!

Tomorrow morning I can get out of bed and not take any pills! For now, I'm as healthy as I can be.

The only thing my oncologist and I really discussed were:

1) Options for getting the monkey off my back.
2) Options if the numbers start to creep back up.
3) Options if the numbers continue to slide down.
4) Options if the numbers stay where they are.

As far as number one, it was suggested that I take some steroids again so I could taper off gradually and not feel so incredibly horrible. That didn't make much sense to me since it's already been about 9 days and I feel slightly better each day. I have a choke-hold on the monkey and his little eyes are starting to stare blankly into space...... the little bastard is almost unconscious.......and if I keep a good grip for a while, he'll be dead. No sense in reviving him so I can kill him in a more humane manner. The monkey must die. Now.

Two thru four all have the same outcome. My numbers are good enough for a stem cell harvest. If they slide downward, we'll harvest. If they go up slightly, we'll harvest. If they stay the same, guess what? We'll harvest.

Harvest? Basically they put a "port" (keg tap) in me. Then they fill me full of "growth factors" (grapes and yeast) and when the numbers hit a certain level, they put me in the "hospital" (wine cellar) and tap the keg.

Out comes Chateau Andre, 2007. It's a hearty Burgundy full of natural stem cells inherent to the original 1955 vintage from the chateau.

The objective is to get three or four transplants out of a single harvest. What will we do with them? Freeze them for later if I need them.

Need them? If the disease starts to go crazy, we can chemo/nuke my bone marrow into oblivion and then "fill er up" with one of the freezer bags..... during which I get to sit like The Boy in the Bubble for 6 weeks.

But clinical trails move along rapidly. There's no guarantee I'll have to go thru any of this. If I'd had this disease 2 years ago, my treatment would have been harder and longer. Thank goodness for research.

For now, color me drug free. Now that I'll be feeling more normal, expect me to document the changes and return from the valley of the shadow.......

Click your heels three times.

These last two weeks have been HELL...... The final crash has been horrendous and I still feel like crapola. I mean BAD. I'm still walking around with testicular pain and general crumminess.

I go to the oncologist tomorrow. We're gonna fight a bit. I really CANNOT continue to do what we've been doing. Can't.

Numbers look good. I just need to get him to set me free. Will advise.

Jeepers golly.

I'm SO tired of writing about pain and misery. Unfortunately, that's life right now. Catfishing again, bottom of the lake. Feeling like crap and being beaten up at the office...... critical delivery time for a system and everyone is stressed..... including me.

I'll get thru it. I promise.

Treading water.

Nothing much new here. Same old stuff. Just dealing with the steroids and hoping to goodness I can stop soon. Only 8 more days until it might be over.

Off the 'roids for 4 days (starting today), then on again for 4 more, then down for 8 until the next oncology meeting with a full blood series.

Ed and I decided we're gonna quit treading water and start swimming thru life again. As a result, we've actually been doing STUFF like real humans. It's an interesting change and it's been educational. I get tired quickly, but every day seems to extend my ability to last. I guess that's all part of the swimming lesson. L'chaim!

Death - what a relief!

Now don't get me wrong. I'm not suicidal or anything. I'm merely examining a perspective.

Ed and I just watched a special on the 1918 influenza pandemic and something occurred to me. When I was SO sick, it would have been quite easy and probably painless to die.

Think about it. Most of us have been sick.... very sick.... at some point in our lives. We've been sick enough to have lost track of time... to have slept for hours. To wander in and out of consciousness.

I know for a fact that I've been unconscious immediately after motorcycle accidents....

So the question is: If you're already unconscious, is it so hard to die? It's just a question.

Dexamethasone

I'm going to try to explain the power of Dexamethasone (Dex). Dex is the steroid I take as chemotherapy. Since it's my only current medication, it's pretty easy to identify its powers. It's amazing stuff.

Here's the scenario. During the last 4 days of my very recent 8 day downtime, I contracted some sort of upper respiratory crud. One of the girls in the office was among the walking sickies and I appear to have caught what she got from her kid. Regardless of what it was called, she felt yucky.

So, I catfished for 4 days and then had a cold for the next four catfish days. Yucky doesn't quite describe it. Respiratory problems with all kinds of crud coming out of my nose and mouth, bone pain, muscle pain, a fever of 100 F, gastric distress, severe testicular pain, muscle cramps in my legs and hands - probably 100 cramps a day (no exaggeration), certainly exhaustion. January 1 was spent completely in bed.

On Monday the 2nd I called in sick. I just couldn't do it. I needed rest but I had the oncologist appointment that afternoon and I was supposed to pick up the refill for my Dex.

I got the Dex at about 2 pm and decided to cheat. I took 2 Dex about 14 hours early.

By the time I saw the doc at 3:30 I felt 100% perfectly normal. No illness, no pain, no nothing. After talking about my numbers, I was probably slightly manic.

By bedtime, I had more energy than I needed. I almost started a project in the garage.

By 1 am I was envisioning ways to kill another guy with my bare hands. (Two of you will remember things.)

By 3 am I forced myself to sleep. At 5:30 the alarm went off and I arrived at the office as fresh as a daisy and with a song in my heart.

Of course, at 6 am I'd had breakfast and EIGHT more Dex as prescribed. See, I take 10 a day when I'm "on". Yeah, TEN. Think about it. Two has the power to turn a man from bat-shit into Batman. Ten causes a person to change planes of existence.

I exist in that altered state for 4 days at a time. Then I'm forced back through untold dimensions (or dementia?) to pay the bill for rampant excesses, both physical and mental. No wonder my second day down always feels like I played tackle football all day, crashed a racebike, and then lost a barfight.

And just about the time my body starts to heal from the barfight, its time for another round of Dex. Right up there, boyo! Slingshot recovery! No pain, all gain! Welcome to 'roid junkie heaven!

According to the doc, I'm on my last "maximum strength" round of Dex. If the numbers stay good and I'm given the stamp of remission, I go on a maintenance dose that's probably as low as 4 days per month instead of roughly 4 days a week. I don't really know how I'm going to like that.

See, if I could give up the Dex completely, then the monkey might not get a good grip on my back (and he's a hard little bugger to fight). But if I'm supposed to babysit the monkey once a month........

A visit to the Oncologist

Ed and I went to the oncologist together today. It was an interesting meeting.

First, he said he'd never seen anyone's numbers change so rapidly. That was encouraging and I'm happy to be his personal freak of nature.

Second, he indicated that this cycle of steroids will be my last "full strength" round of chemo.

Third, he suggested I'd need to taper off the steroids in February so I could exist on a maintenance level. (We had previously discussed my dependence on them.)

Fourth, we talked about harvesting stem cells for the possibility of an eventual transplant at an unknown date that may be "never".

Fifth, he almost used a word that starts with R.... but he wasn't really ready to say it and I'm not really ready to tell you what it is.

In conclusion: Four months. It ONLY took four months. Who knew?

The end of the first act.

Bad stuff first because it's short. It's getting late in an 8 day downcycle and the pain is tapering off. The catfish is really getting used to being a catfish again. Worst part is that 'the twins' still feel like I've been kicked. It's always that way.

And now to the bright spot in our program. This is a significant milestone. Monthly testing shows our progress and sets our milestones for the following month. Here's a recap of the story:

On August 26, 2006 I went to urgent care with an upper respiratory infection. I slid into the abyss over the next weeks, and on September 8, they put me in the hospital.

My September 20th bloodwork showed a very very very sick guy. All of my chemistry was off, my counts were off, and my prognosis looked bad. Certainly the diagnosis wasn't what I expected. Then I went on chemo and the numbers got better, month by month.

Well, now I'm here at the end of December, essentially 100 days from the lowest spot in my physical life, and my blood numbers are VIRTUALLY PERFECT!

Yes, you read that correctly. My blood numbers say I'm a healthy 51 year old. Sure, there's one little count that's fractionally right outside the box, but if you'd seen how far away that number once was, you'd consider it in the box too. In fact, that little number is the "killer number" and it's return to normalcy signals my probable healthy survival.

So, chemo works. Chemo also continues. I don't get to stop doing this crap yet. The doctors tell me we need to keep sledge-hammering the cancer into complete submission with this stuff, so while my numbers might be great right now, if I stop the chemo the cancer will screw up my system again.

So the saga continues, albeit with a significant high point at the end of the first act. I'll talk to my oncologist on Tuesday and lay out a plan. Until then, this is the intermission.

Day 3 of an 8 day down

OMFG this hurts. Everything...... I slept from 4p to 6a this morning and I still feel like rolled up dog doo. Believe me, I'm not trying to whine, but this is amazing. The pain just washes thru me in waves.... I see stars.... I have to stop breathing.... and then my head clears so I can move into a new position at my desk to steady myself for the next wave....

Meanwhile, I'm writing workflow and process documents. Wait, here comes another one....

11 thousand feet.

I must have caught an updraft in the seagull phase. I'm pretty amped. Still awake at nearly 3 am after a full day of building stuff and working on the future bathroom.

Thal update

In spite of the fact that I'm on the catfish side of the lake, my elimination of Thalidomide from my process has continued to reap rewards in the intellectual department. As each residual molecule of ThalidoCrap leaves my fatty tissues, my brain gets better. I'm starting to remember what people pay me money for. I seem to recall the ability to fix stuff and make stuff happen. Damn it's good to feel that again!

(Technically, I don't know if Thalidomide can be stored in the fatty tissues and if the residuals are washing out of my system on a daily basis. However, whether it's a biological process or a simple "remembering how to think" process, I'm getting better every day. Now if I can just find some way to keep the pain from interfering with the continuity of my thoughts, I'll probably be almost as effective as I was several months ago.)

Thalidomide

It's day four of the seagull phase. Really feeling a bit "eaglish" today. See, four days ago, I also quit taking my Thalidomide (Thalmid). The results have been amazing. I can actually THINK again. My inertial guidance system has returned from the dead. I don't stagger. I know where I'm going. I remember things.

Thalidomide has kept me stoned for three months. THREE MONTHS! It's not even the part of the chemo that does the work. It's merely a mild booster..... and it's not worth it. Not at all. At least not for me. I have to be able to use my brain in my job. I have to be able to plan. It's not cool for everyone at work to think I have a drinking problem from the stagger and the weaving.

How in hell have I been driving a car? Jeepers that scares me. Four days off the stuff and I rode my motorcycle today (with some ice on the road - determination sometimes makes me stupid - not the Thalidomide's fault).

Anyway, no more Thal for me. None. Hell, it's not even a fun buzz, it's just debilitating and mildly depressing.

Seagull is sitting on the surface.
Catfish is nipping at my toes.

(Yeah, I know seagulls are seldom ever seen where there are catfish, and catfish seldom come to the surface to feed, but it's a metaphor dammit!)

If you've been counting.....

.....I'm in day 3 of the Catfish Chronicles. Cyclic misery eventually becomes customary.

No quacks

I didn't kill any ducklings today. In fact, I was pretty mellow (except in traffic. Seattle drivers are sometimes amazingly clueless. They tend to think that turnsignals grant instant access to the next lane, impending collision or not.)

A million dollars.

Went back on the 'roids at about 6:30 this morning. As of about noon, all pain was gone. Gout was gone. The world is a colorful and wonderful place.

Tomorrow I may want to slay ducklings just for the fun of it, but today is great. (Don't worry. I have no access to ducklings. I used that sentence purely for imagery.)

Documenting the downhill, part 8

It wasn't too bad a day physically. The catfish was just catfishing. Unfortunately it turned out to be a 13 hour workday with dinner at Taco Hell. I'm freaking exhausted.

The doctor's appointment this afternoon showed positive results. In the full spectrum of blood tests, there is only one item that's out of the norm. Yes folks JUST ONE. Unfortunately it's the "total protein" count, and thankfully it's just marginally high. We'll get a composite report in a few days that distinguishes the good proteins from the bad and we can compare those numbers to the baseline.... but it looks like I'm virtually healthy! At the end of this month of treatment, we'll consider dropping my chemo dose to more tolerable levels.

I'm quite relieved. Now I'm going to bed.

Documenting the downhill, part 7

Ate a huge amount of sugar today. The endorphin rush seems to help. Bloody noses are increasing, just like they did during the previous 8 day downslide. Other than that, I'm just starting to settle in at the bottom of the lake.

Documenting the downhill, part 6

Lazy day. No real motivation to do much. Just puttered around and goofed off. Catfished.

Documenting the downhill, part 5

This is actually yesterday's report. Went to the motorcycle show Saturday morning, picked up a free freezer locally, and then puttered around the house all day. All the walking and activity caused some peripheral neuropathy in the form of cramping and charley horses in my feet, calves, and hips. Gout is returning to my right foot. Bone pain is pretty consistent in my torso. Nothing insurmountable.

Documenting the downhill, part 4

Day four. More bone pain. Some water retention/swelling. Emotionally more stable (I think).

I feel like a bird that gets turned into a catfish every 4 days (and then back again 4 or 8 days later).

The catfish understands what it means to be a catfish. It's dark, murky, risky, and there's pressure everywhere. But that's the life of a catfish, so the catfish goes on.

The bird knows what it means to be a bird. It's light, airy, risky, and the weather can change at a moment's notice. That's the life of the bird, so the bird goes on.

The difficulty comes when the bird starts turning into the catfish or the catfish anticipates being a bird. See, it's not all that bad being a catfish because, after all, you're a catfish! But it's nothing compared to being a bird. Had the catfish never been a bird, it's life would be fine. Unfortunately the catfish gets to be a bird every 4 days and now it knows what it means to be both a catfish and a bird. The bird part thinks the catfish part sucks!

See, I was in the bottom of the lake in the ooze just ten weeks ago, so being a catfish would be a perfectly acceptable condition for me now if that was the limit of my expectation. Oddly, the "active ingredient" in my chemo also turns me into a bird (an emotionally unstable bird, but a bird none the less). While I'm not the high-flier I was last year, I'm at least a seagull and that's way better than being a catfish in my book.

I wanna be a bird again. Five more days of this catfish thing.

Documenting the downhill, part 3

The ride is leveling off. Still not feeling "fresh", but it's a feeling I'm getting used to. Pain is tolerable. Discomfort is becoming acceptable.

I'm starting to realize that I'm getting used to the condition, just as I have gotten used to every permanent change in my body over the years. Accidents and injuries have changed my anatomy since high school, and a person just learns to deal with joints that don't work right or muscles that aren't attached any more. Now I'm just getting used a different kind of pain and altered behavior. Three months sick with only two months of chemo and I'm operating pretty much like a functional drunk. You know, one of those guys who drinks constantly, but who functions "normally" because you've never seen him "abnormal" (e.g. sober).

The roller coaster isn't scary any more. In fact, it's rather familiar. One might say boring and tedious. I don't look forward to any of it, but when it's there, it's there. So be it. (It doesn't mean I like it. It just means I know it well.)

Documenting the downhill, part 2

Day two of the 8 day crash. Feeling like crap. Flu-like symptoms. Tylenol is my friend.

Documenting the downhill, part 1

Day 1 of the 8 day downhill. Just 34 hours from my last 'roid dose, and merely 10 hours after I would have taken it (had it been on the schedule), I'm already feeling bone pain and general flu-like symptoms. They're not too bad, but they've been creeping up on me all day. Muscle tremors are increasing with loss of fine motor control. You don't want me doing microsurgery.

At the top of the coaster.

Today is day 4 of my last run up the roller coaster on this monthly cycle of steroids. 8 days of downturn begins tomorrow morning. Bone pain, testicular pain, digestive problems, and general malaise are always so much fun, particularly in simultaneous alternating combination. It's gonna be a hella ride! Hopefully I'm getting used to this and I can compensate for some of the misery I'll endure. Maybe I should just ignore it. (But like a 3 year old, it's hard to ignore.)

Really good day today.

Day two of steroids and I played in the garage all day. Lots of stuff got done, but none of it was necessary. It was a playday with no people. Ed was off shopping with our friend Chat.

There is one other thing I wanna mention for my male readers. It's a therapeutic thing. Keep your pipes clean! You'd be surprised how important it seems to be to keep your prostate from languishing. Release of "internal pressure" seems to help with everything from urinary to colonic discomfort for a day or two, and certainly fresh applications of the therapy can be found without prescription. Never mind the instant gratification of the moment, I'm talking about the residuals here!

Anyway, I'm going back in the garage.

Junkie

I get to go back on the 'roids again tomorrow. I'm SO STOKED! Yeah, I'm a 'roid junkie now.

Reality

Today is the 2nd day of the crash. I'm nearly at the bottom of the roller coaster again. Jeepers, I hate these days. (serious understatement)

Ya know, I've been sitting here for a couple of weeks thinking about how much better I've been feeling.....but that's relative.....better still isn't good.

And then today it struck me. For some odd reason, I've been walking around expecting to get better like I was gonna get over a cold or wait for a bone to heal. But in truth that's not the case. I've been lying to myself in the back of my mind. I have to remember that this is an incurable and permanent condition. I have to remember that Ed and I will deal with this for the rest of my life. It sucks.

Recovery

Believe it or not, I recognize I'm getting better. There are some side effects and some issues I have to deal with every day, but I'm starting to feel pretty normal on a day to day basis.

My weight is back up to 164 and now I need to regain some muscle tone and work on my overall fitness. Believe me, I'm not cured, nor am I in remission, but it's not gonna hurt me to get back in shape. It might lower the BP and give me more endurance.

BTW - lowering the chemical load by eliminating the excess supplements seems to have helped a bit.

Update

It's been about a week since I updated this thing. I'm back on a regular 28 day chemo cycle. Basically I've been up and down the roller coaster once, and I'm nearly at the top of the ride for the second time again. I'll get another drip today of the magic bone glue that's supposed to keep me from becoming an 80 year old Japanese female rice-paddy worker.

System overload seems to be a problem. I've eliminated some of the supplements that have been recommended by others.... and I think I'm feeling better. Less hiccups, less hysteria, less side effects (although peripheral neuropathy has increased slightly). I think I'm going to keep reducing the chemical load and see if that helps. Kidney function is still somewhat low, and I might be having a problem getting all that extra crap out of my system. The human lab continues to experiment with itself.

I just got back from a 4 day road trip to attend Philips PACS training. The road wasn't any more difficult for me than my regular daily routine. I sure was glad to get home though. I can't believe I did that roadie crap for 26 years.

End of the month.

Yesterday was the end of the first month of chemo. A visit to the oncologist went well, but I hadn't had my blood tests yet so there wasn't much to discuss. Now I know I have to take the upper hand in this area too. There won't be a problem next time.

But we have the blood test results today and the numbers look REALLY good. The chemo is working and I'm "staying the course" without any changes in the plan. With results like these, I can tolerate a little insanity.

Here are the significant numbers from the CBC/Platelet/Differential test.

Leukocyte count - was low, now in normal range
RBC - still low, but 30% higher
Hemoglobin - still low, but 35% higher
Hematocrit - still low, but 40% higher
RDW - still high, but 9% lower
Platelet count - incr. from 46 to 304 and in range.
Myelocytes - zero!
Blasts - zero!
NRBC/100WBC - just 1!
Plasma cells - decrease of 33% from 3% to 2%

And now from the complete metabolic panel:

Sodium and Chloride - back in range.
Creatinine - back in range
Total Protein - down 32% (9.3 - goal of <8)
Alk Phos - went up over range - curious.
Alt - went up too - hmmmmm

I also picked up my heart monitor today and I get to play with it for two weeks. It'll be interesting to see if there's a correlation between the heart arrhythmia and the steroids (that I went back on this morning).

Eight days on Thalidomide alone. Thal isn't the thing that makes me nuts.... it's definitely the 'roids. Definitely. Definitely. Yeah, definitely. I'm a good driver.

Some of you won't get that joke.

A couple of pics.

For those who have never met me, here are some pics of the old (younger) Andre. I'll add a pic or two of the new (older) Andre as soon as I get some. As you might be able to see, I was a fairly active and fit guy at 50 (bottom pic) and a decent athlete at 46 (upper pic).

Runt pics are forthcoming.

Food for the day.

Ok, here's what I ate today.

BREAKFAST
Bowl of yogurt with blueberry jam
2 Eggo waffles with syrup
2 sausage patties
Glass Orange juice
Coffee with sugar and milk
2 Sandies cookies

LUNCH
Dip & chips
2 Corndogs
Large coffee with sugar and milk

SNACK
16 oz whole milk
6 Sandies cookies

DINNER
Plate of spagetti
Italian sausage
small piece of bread
Glass of orange juice
Dip and chips
Ice cream (about a scoop)

Plus a couple of glasses of juice thru the day. This is pretty typical and my weight is hovering around 158.

Good Day.

Sunday, November 5, 2006 was a pretty decent day for me. The roller coaster ride seems to have come to that part where the cars are just gliding along the track at ground level. Normally that means we'll start the clack-clack-clack of the climb to the top of some enormous precipice, but I know this glide has to go on for a few more days before I personally "commence to clacking" again. Bone pain has been moderate and easily manageable with acetamenophen.

I spent the entire day cleaning out and rearranging the garage, actually doing some pretty strenuous stuff including loading the truck for the dump later in the week. I'm pretty tired right now and I know I'll sleep well tonite. After dinner, I'm going to post a list of everything I've eaten today. My mouth and my tummy feel like a teenaged kid. This is the first time in probably 20 years that I can eat virtually anything I want without repercussions. It's amazingly fun.

Hello to my readers.

I just wanna say hello to all the people who read this on a regular basis. It means a lot to me that you take time from your day to listen to my rambling. Thanks.

Unenviable task.

This weekend is gonna be a hum-dinger. See, I haven't told my mom or my sister. We're just not that close...... My fault - I enjoy my privacy.

But I wrote them a letter, and my brother is going to deliver it to them in person this weekend. I don't envy him. Hell, I don't envy my mom or sister either. It's not going to be easy for any of them. On the other hand, it's not too easy for Ed and I.

Whatever burden they assume will be something they'll have to bear on their own. I don't have room for it on my shoulders. It's not that I don't care. It's just that I don't want to deal with it. There, I said it. I'm not gonna be Superman.

The library.

I was just thinking.... my brother once delivered a eulogy that equated the death of a man to the burning of a library. Every man has a library of information inside him and his demise often removes his 'books' from the public domain.

I have no intention of having my library burn.... but let me tell you, I'm rearranging the stacks right now and I'm not following Dewey.

Marbles? Did anyone say marbles?

Down the other side of the roller coaster.

Two days off the steroids. Six more to go before I can get back on them. I feel like a junkie needing a fix. Bone pain returns in spades, the buzz from the Thalidomide is perpetual. My mind wanders and suddenly I wake up to lucidity for a few moments and feel human again. Brief flashes of my former self. Oddly, that guy feels lonely.

Imagine sticking an old 9 volt battery on your tongue.... all over your body..... 24 hours a day.... and being drunk..... and in a bar fight you're losing..... and this is as good as it gets. It's what I've come to expect every single day and every night.

I dunno if I'm depressed..... but I'm certainly exhausted. I guess I'll know I'm depressed when my brain starts to turn off.

Holy Moly!

Wow.... Staying on the Thalidomide, off the Dexamethasone for the next 8 days.... The roller coaster ride is pretty amazing and it's gonna get worse. I'm crashing HARD from the steroids (Dex) and the Thal keeps me completely stoned.... I mean STONED, drunk, staggering, goofy, mindless, zombified, stupid. Jeepers! Who am I?

Upside? I'm learning patience, acceptance, tolerance, calmness, and...... maybe something else, but I dunno..... I'm not all here right now.

General upswing, I guess

In general, I guess I feel better. The Thalidomide makes me completely stoned though, so we're doing some experiments with timing the pill so I don't feel so zombied-out at work.

Bad stuff

My BP is way high, and I had an episode with cardiac arrhythmia tonite. I guess I'll email my PCP.

A change in chemistry

Your favorite lab-rat gets to do an experiment on himself this week. I'm going to go off the Vitamin B6 I've been taking. Side effects are making it seem like I need to do this.... Will keep you posted.

GOOD NEWS!

I just got my 'protime' numbers back. This is a test of my blood-clotting rate. IT'S BACK IN NORMAL RANGE! Yipee!

Hiccup solution

It seems we've (quite literally) stumbled upon a cure for the hiccups. Ingestion of at least 4 fluid ounces of Cabernet-Sauvignon during dinner has eliminated the hiccups from my last two evenings. It works for me.

Progress report

Ok, I'm at the end of the second (4 day mini) round of steroids, and on my 12th day of Thalidomide. Bone pain is virtually absent, so I've been off morphine for about 3 days now. I haven't had to use tylenol much at all. The upside is that my digestive tract is returning to normal, which is positively impacting my urinary tract, which is improving my libido just a bit. Basically, this is all good. There's only one thing I'm still watching out for..... and that's my body weight. 160# this morning. 185# when I left Dallas 11 months ago. 180# before the trigger event for this adventure. So I've lost 20# in about 2 months. Maybe I should ask Jenny Craig when my skin is gonna shrink back to my new body shape. I look like a freaking lizard with my clothes off. Wrinkles and excess skin.... folds and flaps....... You know, like some 75 year old lady who decides to get back into shape, but who generally arrives in a room about a minute before her all of her skin gets there. (It's not really that bad. There aren't any 'granny-flaps' yet, thank goodness.)

Anyway, life gets better thru chemistry........ ;-)

Last night I had a vision.....

.....a mini-dream..... a premonition?

Death got into the shower with me. He slipped on the wet surface and his head came off when it hit the edge of the tub. Death DIED at my feet!

I got the hell out of the shower.

Altered States

It's really interesting what a drastic change in body chemistry can do. Sometimes I find myself wandering thru what I normally percieve as reality in an semi-unreal state. It's nothing too drastic, merely a shift in vision, hearing and 6th sense perception. I can be involved in conversations that I'm fully "in gear" with, and yet the conversation is more real than the person I'm talking to..... It's as if I'm being spoken to from a movie or another place in time..... It's real, but I don't get the sense that the person is on the same plane as I..... Get it?

I know the shift is coming from me... from the chemo and all the other wierd stuff I put in my mouth every 6 hours. Certainly I'm not going schitzo and beginning to think the world is wrong and I'm right. It's just interesting to watch..... I'm using my own brain as a behavioral observatory. Reality does shift.

Chemo seems to be eliminating much of the pain. I've been off morphine for a couple of days and am managing it all with occasional acetamenophen. It's not hard right now. Otherwise, I'm just getting used to the biological changes.... they're minor, and in the grand scheme of things, relatively unimportant. Problems with my stomach and intestines, altered vision, altered hearing, strange smells, high blood pressure at times, nearly absent sex drive, continued loss of weight.

Some things get better, some things just change.

Freakin' hiccups!

Hiccups. Hiccups. Hiccups. I get about 1.5 hours sleep in between sessions. Ever been woken up by hiccups?

They irritate everything in your chest after a while. (/Whine mode on/) Makes me wanna just die because the pain is starting to come back too. (/Whine mode off/)

We even tried the ig-NOBEL trick.... it only worked once......

Anyway, off to bed again.

Living in the here and now.

This is gonna seem a bit strange....... But I've sorta done a quick survey of my general reaction(s) to life-threatening events in my life. Historically, I've always become more "carpe diem" in my attitude toward my continued survival.

After my 6 days of hospitalization from a farming accident, I wandered away from corporate pursuits and took up roadracing again (to some success).

After every hospital visit from roadracing, I delved more deeply into the sport and never let it set me back much.

What is my attitude going to be like if I kick Myeloma in the ass? Will I become more of an adventurer within the limits of my responsibilities here? Will I shirk my responsibilities and ride coast to coast to coast to coast while I write my memoirs?

And what of Ed? How will he take to this drastic change in me? Will I even change? Stay tuned.

Chemo Day Three

Hickups. Every evening starting at 5p and ending at about 10p when I go to bed. Not fun.

Pain - Greatly reduced. The doc suspected bone pain as the culprit and thought the chemo might help. It did.

Weight gain - 3 lbs to 167. This is a good thing.

Vision - inverted. Suddenly I don't need reading glasses but I can't read street signs at a distance. Wondering if it's temporary.

Petichae(?) - small blood clots under my skin from spontaneous hemorrhages. Enough to look "freckly". Mostly on my legs. Appeared first day but don't seem to have continued. Just need to watch them.

Digestive system - back to functioning normally. Yippee!

Kidney function - appears to be improving.

So here's the real deal..... I guess my body is reacting well to the drugs, but my brain and control systems are sorta screwed up. The steroids are making me aggressive. Thank goodness they're 4 days on and 4 days off. My vision was a little strange today because it was foggy on my way to work. Nothing quite like a vision change on a visually challenging day!

I don't think I'm much fun to be with, but I'm improving. Now we just need to watch the numbers and make sure they're improving month to month. We just got some test numbers back that weren't so hot... Seems I'm producing ~100 times the number of antibody proteins I should be. If that number starts to go down, then the chemo is working. Gonna keep an eye out for that. Anyway, that's the story for today. Going to sleep now.

Surprise, surprise, surprise

Ok, so I got a call from the oncologist today. Apparently my blood tests weren't so great last night, so I've got to go in for two more units of blood at 9 AM tomorrow. That will add up to a total of 8 units since September.

I took a handful of steroids this morning. (10, as prescribed.) I've felt slightly manic and very good physically all day. Imagine what I'll feel like when I have a complete blood count and the steroids! Anybody wanna jog the 17 miles to work?

I discovered a horrible side effect of the steroids today. THEY MAKE EVERYTHING TASTE WONDERFUL! I had split-pea soup with ham chunks for lunch today in the hospital cafeteria. It qualified as one of the tastiest meals I've ever had in my life. This is NOT a good thing. I'll have to keep that little problem under control.

Chemicals and chemotherapy.

It begins.

Procrit gets injected into my leg once a week so I'll grow more red blood cells.
Vitamin B6 and Warfarin will counteract the side effects of:
Thalidomide, which will kill the cancer cells and enhance the effects of:
Dexamethasone, which is a steroid that will turn me into Mr. Hyde as it kills more cancer cells.

And next Monday, I get a bisphosphonate to help strengthen my skeletal bones.

Side effects? Hell, you don't want me to start.... but I'm really worried about the steroids.... Imagine me, with my personality, all wound up like a muscle bound steroid freak. I've already told Ed to find a "safe word" he can use when I'm all 'roided-out.

So far, I've injected myself with some Procrit. Everything else starts in the morning. Wish me luck.

Oh, did I mention that the Thalidomide pills are $107.14 each? I take one a day.

Practicality

I told a very close friend the bad news. He cried, and with a squeaky little voice that most men would never admit to owning, he said:

"I always knew you'd pick a chicken-shit way to die."

It made me proud. See, I've been involved with some really dangerous stuff. I'm not talking about "Jackass" stupid stuff, but certainly the kind of stuff most people wouldn't do on a bet even if they were high on PCP. Some of it has damn-near killed me, and all of it could have killed me. Obviously it didn't. (Either that, or there are blogs in Hell and you're reading mine.)

And so, for my friend to say what he did was an acknowledgement that I'd survived (and therefore conquered) danger and death. That's an accomplishment as far as I'm concerned.

But it made me think.......... Have I always been ready to accept death? Don't misunderstand. I never chased death per se. The "success" of my adventures could only be measured by eluding death, by watching the black robed spectre walk away pissed-off, time after time.

I now find myself wondering if I'm just being smug.... assuming that I'll be able to keep digging clams in the shallows of the River Styx, ignoring the rules of tradition and 'fraidy-cats', merely assuming that I can win at the game again by sheer will and contempt of the institution of death. Arrogance can be a strong-suit in certain situations and I can be amazingly effective at it.

Hell, maybe I don't even believe in death. I don't know. I've never done it before. I'll keep you posted.

Trust me, I'm a professional!

Communication...... I've come to believe that the difference between a SuperDoc and an AverageDoc is communication.

I visited a SuperDoc early last week. She communicated with me, then she communicated with my AverageDoc. Turns out that they knew the same info, shared the same opinion, and each one convinced the other to change a small part of the project plan. Unfortunately, AverageDoc still doesn't get it.

PATIENTS DON'T KNOW WHAT THEY DON'T KNOW.

So it's up to the doc to answer patient questions and then tell thier patient the answers to the questions they DIDN'T ask!

It's not right to tell the patient "Come in for some x-rays and we're going to give you some pills."

"What are the Xrays for? What do the pills do?"

"Oh, the Xrays will tell us how your bones are doing and the pills will start your chemo."

"Ok, why are you interested in my bones, and what are the side effects of the chemo meds?"

"Oh, well....... it's very complicated."

"Then start explaining. I have time."

"Trust me, I'm a professional."

Professionals make mistakes and I don't come equipped with a reset button. Explain the whole thing to me and let me make some decisions (or at least understand the program.) Let me know what to expect so I can at least tell you if it's working or not. I can be our first line of defense against failure if I know what's supposed to happen.

Quite honestly, I feel like I'm a car and my owner isn't being allowed to watch what the mechanic is doing.

So if you're a doctor, don't leave the patient out of the equation. You should be treating a patient, not a disease! Subtle difference. Major importance.

I fixed......

I fixed the 'comments' section. You can now add your own witty reparte' to the equation. Just click on the "comments" at the bottom of each post.

Some doctors suck.

Ok, let me start off by saying I DO NOT HAVE WALDENSTROM'S MACROGLOBULINEMIA. We were misled by a young doctor who apparently has unusual motivations. Maybe he had a blank space in his Oncology Bingo that could only be filled with Waldenstrom's Macroglobulinemia. Well, he screamed BINGO and stood up too quickly, so he embarrassed himself when they checked his card.... and it turned out he only had another Multiple Myeloma.

Here's the deal. Internist #1 attended to me in the hospital, scheduled tests, came to a decision, and told me NOTHING DEFINITIVE. I could see concern in her face and voice, but she was reasonable and prudent in her distribution of information. I respect her actions.

Internist #2 is my PCP. #1 talks to #2 and they collectively derive the probability that I have Multiple Myeloma. Internist #2 tells me so. He also tells me that they have consulted with an oncologist who wants to see me ASAP and PDQ.

So Ed and I arrive at the oncologist's (#3) and we find him reading a web page on Waldenstrom's Macroglobulinemia. Once he's done his extensive research, he comes into my room and announces that I probably don't have Multiple Myeloma, but I almost definitely have Waldenstrom's Macroglobulinemia. He even asks if I'm a betting man......
Duh! Today I got the following email:

Andre,
The test results are just about all back - it looks like you have multiple myeloma (IgA-lamba). We should also get a series of xrays to look for any bone lesions from myeloma. There are some additional tests being done on your bone marrow biopsy that aren't back yet, but it doesn't change your initial therapy.
We should start therapy ASAP of 2 different medications - one called thalidomide, the other called dexamethasone (both are pills).
Also, since you have anemia, we should also start a medication called Procrit (injection) to help your body make more red blood cells.
Do you want to come in this week to get started?

1) Thanks for playing YoYo with Ed's and my emotions.
2) Thanks for distracting us from our prior research.
3) Thanks for delaying / confusing our establishment of outside connections.
4) Thanks for thinking I'm gonna trust you without a very confirmatory 2nd opinion.

So, here's a lovely recap of the disease and what I'll be enduring. It's a disease of the blood that's based in the bone marrow. The way to put it in remission is to harvest a bunch of good stem cells from my bone marrow. Then they'll kill off all the bone marrow and all of the white blood cells. Then they'll put the good bone marrow stem cells back in me and hope they grow without re-creating the problem.

Yup, for those of you who remember high-school biology, that means I'll have NO immune system function for about 10 weeks. I get to live on antibiotics and boiled water in two rooms of my house for 10 weeks. Everything has to be cooked thoroughly, everything has to be pretty much tasteless (how do you sterilize table salt?) Are ya paintin' a little picture in yer head yet?

Of course, I get this kinda fun treatment after they chemo me 'til I glow in the dark and I'm hollow inside. Betcha I get down to 145#.... sexy hott!

It's really not gonna be as bad as the movie I just put in your head..... I'm just pissed off at the doc and I'm venting......

Good side? I can spell it. Other good side? There are enough patients that most doctors have seen other patients.

I'm sorry.

Look, I'm not here to condemn any of you. I just wanna educate you a little. I know very few of us are trained in the right way to deal with a friend saying "I'm gonna die soon."

Most people say, "I'm sorry."

What the hell are you sorry for? I mean, you didn't do anything, so why apologize? You didn't give it to me, did you?

So here are my suggestions for dealing with the imminent demise of a friend, coworker, man on the street.

1) Be GLAD it's not you. Just don't say it.
2) Appreciate that the news can be life-changing for the victim. Ask how they're holding up emotionally.
3) Recognize that the victim is often worried about his family or a loved one, far beyond his concern for himself.
4) Offer your emotional and spritual support any time they need it.
5) Offer to talk to their spouse, S.O., or kids if needed.
6) Help them with preparations if you're close enough..... these are things families sometimes don't address even in times of inevitability.
7) Recognize that this could happen to anyone at any age. So get right with your family, your friends, and your faith. Do the paperwork and make the hard decisions now. It's not right for you to dump it on the people who are missing you.

Just don't say "I'm sorry."

UPDATE

Ok, here's the update. Looks like I have Waldenstrom's Macroglobulinemia, not Multiple Myeloma. They're closely related, but one is more rare than the other.

Well, in my usual inimitable style, I chose the rare one. Exclusivity has value! NOT!

According to the websites, only about 1500 people per year are diagnosed with Waldenstrom's. Unfortunately, this means that very very few oncologists have ever seen a case in front of them. What's that mean? It means I'm lucky enough to have more scientific mindpower researching this matter, between Ed and our friend Pam, than the hospital chain I'm visiting.

Anyway, the prognosis doesn't look good, and everything we read on the web is tainted by people trained to put a positive spin on the worst possible news.

As an example..... the doc says "patients live for years". Yeah, statistically they might, because this disease is generally discovered after the patient is 65, and when the patient is asymptomatic.... Therefore, he can live 8-12 years before the first of the big 7 symptoms appear.

Meanwhile, mine was discovered at 51 after I suffered thru 6 of the big 7 symptoms. What's that mean? Hell, nobody knows...... nobody's ever seen anyone with 6 of 7 walking around and going to the office every day.

So, keep an eye out on here. Keeping up with my progress will make you just as experienced and just as savvy as most doctors. ;-)

Just because I'm sick, doesn't mean I stopped being a wise-ass.

OK, here's the deal with a little history.

In November of 2005, Ed and I moved to Seattle. Both of us had new jobs here and we fell into a life of work, play, and home renovation that we both enjoyed. Life was good.

Almost a year ago, I started noticing that my endurance was starting to wane. I was far from becoming a couch potato or a keyboard jockey.... in fact, the neighbors still thought I was the hardest working human on the block.... but I knew something was wrong. I had no real stamina, my pulse would rise if I did anything strenuous for very long, and in general, I just felt "off".

I actually suspected that I had a blocked artery and/or some sort of cardio-pulmonary disease. I could exhaust myself to the point that I could sense myself almost blacking-out...... simply not enough blood and oxygen to the brain. Slightly elevated cholesterol, 20 years of smoking 3 packs a day (quit 10+ years ago), and my 50 years on the planet made me think down a common path....... blocked arteries.... maybe I'd need a bypass in a few years.

Then about 6 months ago, things started to slide downhill rapidly, but I didn't recognize the change as anything drastic. Basically I just became unmotivated, lethargic, and unconcerned with the things that went on around me. I blamed most of this on my job...... I hated (HATED) working for Hologic and it showed in my attitude and my actions. Bingo, one thing follows the other, and my hatred of the job spread into apathy about home renovation and many other aspects of my life.

All this time, I was a bear to live with. I was grouchy, unhappy, and negative..... and I expressed myself often. Not a good thing. Thankfully Ed is a saint.

So Ed and I bought a boat. It was originally supposed to give us an activity to do together.....the boat always made Ed smile..... and we had fun when we were out on the water. But toward the end of one of our days on Lake Washington, I tripped over something on the deck and fell against the console with my ribcage. It hurt and I still believe I cracked a rib or two...... Believe it or not, it was a blessing.

The injured area tended to cramp spontaneously. It was a charley-horse type of cramp that was amazingly painful.... I saw a doctor about it and he determined that I'd bruised a nerve bundle, but that it would go away soon. He warned me not to tape my ribs up (to prevent pain) because the taping can actually cause pneumonia due to the accumulation of fluid.

So I didn't tape up, but the pain required that I sleep on one side of my chest and not breathe very deeply. I believe this brought on a case of bronchitis that ultimately raised the flag I'm sailing under now.

Ok, so the bronchitis started it's standard march for me..... lungs, then throat, then a slight nasal infection.... and usually, this would be the end of it.... One week of feeling lousy, but predictable and easily overcome.

But there was a twist. The creeping crud never left my nose. I was strapped with bloody noses, enormous discharges, and my endurance was measured in minutes, not hours.

I'd been to Urgent Care on two successive weekends for the bronchial part of this... and finally after a research call in Everett, I wandered back into Urgent Care on a pleasant Friday afternoon. I felt like absolute dog shit...... I hurt, I had no energy, and I was really tired of feeling bad.

Urgent Care took a blood test and documented my complaints.... a few minutes later they advised me I was going to Virginia Mason Hospital by ambulance. No, I couldn't drive myself. No, Ed couldn't drive me. I was going to travel with an EMT staff "just because".

It seems I was anemic. Anemic like "you shouldn't be standing here", "are you sure you're not dizzy?", and "Oh my god, you need to sit down" anemic. So I looked at the numbers..... and sure as hell, I only had enough blood in me to run the average 8 year old. The numbers were scary.

No wonder the doctor said I'd be getting a transfusion once I arrived.

Ok, so over the next three days, I got 4 units of blood. The blood made me feel better, but the 4 units only brought my blood counts half-way to the bottom of normal. I got a ton of blood tests done and I ate at the whim of the doctors...... here's the tally of tests.

A 5 vial blood draw every 8 hours for 3 days.
2 X-rays
One camera down my throat.
One camera up my ass.
2 CTs. One with barium contrast and the other with injected contrast.
One Ultrasound.

From all this, they determined that I had an enlarged spleen and that I could go home until the rest of the blood work came back. I was still in pain, but they gave me a scrip to alleviate the misery. While I was in the hospital, I could have morphine every two hours... now I'm stuck with 2 Vicodin every 4 hours. Whatever. (The enlarged spleen is the cause of the pain, and the enlargement is caused by the spleen over-working to help clear my blood of bad blood cells.)

So I went home and made an appointment to see my PCP ASAP that week. I saw him at about 2:30 pm on Wednesday, September 13.

His response was simple and to-the-point. "Looks like multiple myeloma." It's a cancer of the bone marrow that causes the marrow to produce some red blood cells and a an uncontrolled number of one specific type of white blood cells. Normally, the marrow produces a spectrum of different white blood cells that help fight infection... but in my case, only one type is being produced in unlimited quantities, somewhat at the expense of red blood cells.

So what does that really mean? One, my body won't be able to fight infection very well. Two, I'll have a tendency toward "hypercalcemia" because my bones will be dissolving into my bloodstream. And three, I'm going to have one hell of a roller coaster ride thru the next 12 to 18 months.

For what it's worth, multiple myeloma isn't curable. Without treatment, the prognosis is for me to die within a year. However, there is a rather drastic treatment that can force the cancer into remission for an indefinite period of time.

A series of Mengele-esque steps can be used to acquire "good" stem cells from my bone marrow. Then chemotherapy and radiation therapy can be used to kill all the bone marrow in my body. Then there's more Mengele-esque procedures to get the stem cells back into my bones. At the end of this macabre chain of events, we can HOPE that the stem cells all produce good blood cells and that everything will remain in remission for "a while". Nobody has a clue how long that might be.

Anyway, I'll be keeping people posted thru this site. Good, bad, indifferent, or merely introspection.... it'll be here.