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What a long, strange trip it's been! (warning: lighthearted scatalogical humor in this storyline)

Posted Nov 04 2009 10:07pm
So sorry for the delay between responses but as you will no doubt discern, there have been reasons for the delay. I have no intention of giving birth to the Great American Novel, no desire to employ literary devices stolen from Cervantes (a story within a story? no thanks), no need for ornate medical devices tied back into the Merovingian Bloodline Conspiracy exploited in Umberto Eco or Dan Brown, etc.

No, I merely got very sick and that took me out of commission for a while.

On the weekend of February 20th or so (that Sunday to be precise) Jill had gone off to the store in a valiant effort to keep the apartment stocked with healthy alternatives. Sadly, while very well-intentioned, this all went out the window and as I write this I can jealously smell Jill's donut holes from Krispy Kreme's wafting in over the comparatively dull strawberry pure juice bar that I'm eating. Anyhow, the events of that particular date had nothing to do with either strawberries or donuts...rather, they had to do with some of varmint casserrole (my money in these parts is always on possum [sic]). The astute readers among you will note I already made this leap of logic in my post at the time.

I had found a bloc of old war movies to watch on TCM -- Bridge on the River Kwai was playing at the time, when the fire alarm went off. I leapt to my feet to pull some jeans on and that's when I noticed that painful, stiff, sickly warmth that had first washed over my back when I was golfing back around Thanksgiving. I could barely make it into my jeans, but somehow I managed to negotiate 10 flights of stairs down and out of the building with a resolve that Alec Guinness' colonel could only have been proud of -- only to learn that the source of the fire was a gruff older man's wife [ed. we'll call her Sniffy]. The gruff old man kept mumbling about how mortified Sniffy was...and as put out as we all were, I couldn't really bring myself to ask what kind of varmint was being prepared. I waited interminably for an elevator (not gonna put ten more flights on stairs on this back!) and sooner or later, found myself back in my apartment in one piece. When Jill came back later that afternoon, we resolved to report the painful back episode to the doctor the next day.

When we met with the doctor (the one who suggested Cymbalta), he was going to have a bone density scan run, plus the standard post-Velcade bone marrow scan / gene array, plus an MRI for the back pain, etc., etc. Long-story short, the bone marrow went off without a hitch, as did installation of the central Cook Catheter, a three-aperture port in my neck which sounds pretty gnarly but which was actually a GODSEND -- no more needles! Everything from draws, to cultures, to insertions of isotopes for PET Scans, inserts of magnetic contrast for MRIs, IV pushes, etc. All soup to nuts painlessly taken from that one access point. However, the MRI was never actually scheduled and fell through the cracks [cue ominous and foreboding music].

My brother Peter had come out the weekend of the 27th and 28th to give Jill a few much-needed days back with the kids, which was remarkably nice of him. The bone density scan looked okay so there was no explanation for the back pain, which was worsening. I figured it was weakening bones and I let people know about it -- in any case, I was in treatment now, thank God. I remember it was almost like me taunting the cancer at this point. Mocking it. "Bring it on," that sort of thing.

Peter and I had a blast. We ate good food (including sushi), had tasty beer, watched a lot of old movies, laughed until we cried at everything from family members to some of the aforementioned movies, and had an altogether wonderful time. By the time he left, however, at the risk of being blunt, the ol' bear hadn't visited the woods in about five days. I had been warned that the chemo, painkillers, Thalidomide and various other drugs have a tendency to "bind you up"-- but who takes those things seriously, you know? Nonetheless, I had told the nurses in conspiritorial tones in the infusion center the previous day and they had prescribed something called Magnesium Citrate -- which Peter and I discerned is essentially the same thing as solid rocket booster fuel. Directions: drink half bottle, grip toilet bowl for dear life, brace yourself.

After the first prescription (which was filled in largely the same manner that weapons-grade uranium is conveyed between laboratories) was used up, I was given another bottle as well as a smaller bottle of something called "Flowmax." Somehow, this smaller bottle with the simpler label looked far more frightening than the fancy multi-syllabic name of the first solid-rocket-fuel-meets-colon-cleanser. At any rate, after a couple of more doses, a tiny little squeak emerged from the mighty apparatus so while I wasn't sure I'd be able to stop once I got started, I was likewise certain I wasn't doomed to some forgotten sphinctreless chapter of Milton's Paradise Lost. Jill had returned from Los Angeles, and panic started to subside...

Until that evening, when I woke at 1AM buckled over in pain, unable to move, stand up, sit down, roll over, or do anything. We called the doctor. He agreed that even one little toot was progress, but that I should get in there for pain treatment if nothing else. And so shortly after 1AM, March 2nd, we checked into the emergency room at the University of Arkansas for Medical Sciences. Soon after we arrived, they admitted me to the hospital (but of course we had to wait 9 hours in the ER for a room).

My gut was KILLING ME. I felt like I was having a baby. Ladies, my hats are off to you. The pain was literally coming and going in waves. I had Jill walking me through Lamaze breathing exercises in order to make it through this colossal impending dump that was threatening to turn me into Dr. Jekyll and a nightmarish Mr. Turd, bounding around committing atrocities. I was literally focusing my breathing so the horrible turd-like Eye of Sauron inside me would turn its back on me long enough for me to return the one ring of Flowmax to the forges of Mordor.

Despite my protestations, the clinicians moved me from one stretcher to another one to take a chest x-ray. I remembered every funny urban myth "poop" story about college athletes coming back to me at once now. Somehow none of them were funny any longer.

The GOOD news is that there didn't appear to be a bowel obstruction. So now we just had to keep taking the Exploducon 6000 until it had time to work its magic, and manage the extreme pain in the meantime. We tried Morphine. Nothing. We upped the dose. I literally heard the poop laughing at us. "Pathetic earthlings," bellowed Turd the Merciless from within. "Who can save you now?" Normally, this would be funny -- you know...haha, talking poo, hahahaha. Not in this case. I was filled with the fear of the grave in a vey real sense.

We increased to a new medicine...Dilaudid. This stuff is STRONG and had worked for Jill when she had viral meningitis the previous summer. And it worked for me...but unfortunately in between doses we noticed that which the gas pain had not allowed us to focus on previously: there was something very wrong with my back.

They scheduled me for an MRI Thursday the 5th. On the 3rd and 4th I basically toughed it out on meds and watched my blood numbers change daily. All of this information seemed good. Of course I would be getting the PET Scan on the 5th as well, which I couldn't wait to see since BB's data shows a very, very high correlation between long-term successful outcome and reduction in focal lesions from the test Velcade and Melphalan.

Bear in mind, I've also got falling white counts (and platelets, red blood counts, etc) this whole time because I'm now neutropenic. This is important for two reasons: (a) I am constantly fighting off infections, and (b) I have a constant wet, hacking cough. Now -- quick question: your back is killing you and you cough uncontrollably; when you cough, do you feel (a) terrific, (b) fair, (c) in unspeakable agony??????

So I'm in the MRI answering "C!" to this in my head over and over and somehow by the grace of God and a ton of Dilaudid I get through the MRI -- which confirms that I have a partially collapsed left lung, bilateral pneumonia (explains cough) and two broken lumbar vertebrae (explains horrible pain in back).

By now, though, I am fully neutropenic. I negotiate waking sedation for the PET scan because without this, there's no way I can hold still for them to get a reading. While initially not happy about it (because it delays his protocol) BB sees the logic in this and schedules the PET with conscious sedation for the evening of the 6th. Of course any procedure done to correct my back pain is too risky since I couldn't fight off any ensuing infection and so I am left to strike a delicate balance between Dilaudid and Ativan which is used to help sleep and fight nausea (without contributing to constipation!).

Meanwhile, I am getting twice-a-day shots in the belly to stimulate blood growth factors and to mobilize the blood stem cells from the marrow into the blood stream where they can be easily harvested for use in high-dose transplants that are upcoming. The quality and pain of these shots vary by nursing staff but most of them aren't all that bad. With no platelets, the belly does bruise rather nastily, though...I look like I got shot in the belly with one of those anti-personnel crowd dispersion devices.

Speaking of the nursing staff...they are delightful, by and large, particularly on the Myeloma floor where their dedication to patient care is extremely evident. I have only very nice things to say about them.

Well, and also one funny thing.

One woman who comes from a former Soviet republic doesn't have perfect mastery of the King's English. She was just going through all of the horrible things that can happen to me from doing a procedure while neutropenic (i.e. no immune system, no ability to overcome more trivial infection, etc.). At one point she say "I am now to walk from room to get lab results for you." She leaves the room and then comes back about three minutes later, looking very serious.

Stonefaced and Stalinesque she says "There is something I mus to tell you."

"Y-yes?????" I asked, trepidatious about the labs even as they were just routine.

"We have harpist."

Great. If I need a little "pick me up / shuffle" from some nonagenarian harpist of Armenian descent that looks like a key part in one of the early Woody Allen movies to lighten my day, I'll be sure to call. Just the other day I was reminiscing abot Pappy Boyington's squadron runs over the balkans and ondering what hapened to that little Azerbaijete Susie May Glotzsomanjanian?

Sooooooooo....with all that said and done, where are we as of Friday, March 13, 8:14PM Pacific?

1. The PET scan showed complete absence of all the focal lesions identified during my trip / scan /the week of Jan 24th. This is HUGLEY good news. First, in the qualitative sense, it means all seven of the clusters of cancer cells that were observed a few weeks ago are now obliterated. Nada. Nothin. That means there will be no more pain. No rib pain. No back pain. Nothin'. QUANTITATIVELY it is an even BIGGER deal. There is a "very, very high correlation" between this finding and long-term, deep, sustained remission / curative potential of the total therapy protocol.

BB came to share his excitement about this. He was patting my head and playfully pulled out a tiny clump of hair. He told the nurse on duty to order a haircut for me so I don't look like a homeless person. :) With this in mind, I had the building's stylist come by. He was kind enough to give me the skin-job haircut -- I tipped him well and told him to use it for a child who couldn't afford it.

2. I responded very well to chemo with manageable side effects -- but for the back pain, which shouldn't be there next time 'round, and the constipation which I now know to look out for, I'd have more or less skated through.

3. I am doing very well with harvesting and should be done after my session tomorrow with enough bags of stem cells for 6+ transplants in the future (total therapy doesn't envision needing more than two, but also anticipates future harvesting to be difficult given the amount of Revlimid and other drugs being used today).

4. I should be getting my back fixed via a simple procedure called a vertebraplasty on Monday or Tuesday, after which the back should no longer be an issue. And then I can finally get out of the hospital and go back to the Little Rock condo.

5. I anticipate beginning high-dose Melphalan plus transplant (the first of two) late next week.

THANK YOU VERY MUCH for your patience. I'm sorry it has taken me so long to update this but as you can see, there's been a lot going on and I did want a little bit of the suspense and limbo to come through and to preserve the reality of the experience. You folks are wonderful friends and an amazing source of strength and inspiration.

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