Flying while Driving

Today, the day I was supposed to have my aSCT but couldn't, I restarted high-dose steroids. Dexamethasone is the best drug we have for myeloma, and one of the hardest to take. I hate it, but it comes with nearly every other drug we take. The larger doses drive me crazy.

If you like, here's a set of three posts I did years ago to the myeloma support group describing why I don't drive on dex. You may enjoy them.

Catastrophe!

Today began with one kind of catastrophe and ended with another. After all the preparations I had made, my laptop died sometime in the night. I called Apple at 7am, and got an appointment with the local Apple repair store for 10:20.

I couldn't imagine spending days in the hospital with no email, no broadband, no TV, no games, nothing! So, I admit, I told the young man at the store of my predicament.

In less than four hours they had replaced the logic board in my laptop and given it back to me, a record in modern computer service. There were other consequences, because some essential software is keyed to the board and had to be reauthorized. I also lost nearly the entire morning and a good part of the afternoon, which would otherwise have been given over to packing and final preparations, but it was UNTHINKABLE to begin a transplant without Internet access!

Then the H-bomb dropped. My transplant doc called with the news that the preliminary results of my bone marrow biopsy were considerably worse than anticipated, so much so that the transplant is off for now.

The point being, with a high percentage of plasma cells in the marrow (I think I heard him say 67%) as well as other problems, if we went forward we would probably not achieve the result we wanted. Instead, it is time to rethink. We should have the results of the DNA-level testing at the end of the week, which may help determine what course of action to take next. The strategy is to do what we have to do to improve the numbers, even if that means doing some rather cruel chemotherapies I have thus far been able to avoid.

In short, the transplant has been postponed for perhaps a couple of months, and I have to restart the steroids immediately to hold the disease at bay. We will get the full biopsy results next week, do some thinking, and chart a new course.

Meanwhile, I am officially and completely exhausted. But I will have more to say after some rest, so stay tuned.

The tree that didn't fall in the forest....

I went to Scripps Green Hospital yesterday morning, expecting to have surgery under general anesthetic to place a central venous line installed. Didn't happen. Instead, my doctor decided to do a bone marrow biopsy that included advanced tests, including many genetics tests. He also changed the kind of central line from a groshong to a PICC line, meaning, I won't need a major surgical procedure; a PICC line can be installed under local anesthetic.

So this Friday, in I go again, this time to have the line installed and my marrow half-killed (the Melphalan, the drug that kills the marrow, will be given in two doses, one Friday, one Saturday). Then, on Sunday, my cells from 1998 will be returned to me as I've detailed in another post.

Or not. Wait and see.

Meanwhile, I did test both types of broadband access while cooling my heels. The hospital's internal access is surprisingly good except for one small point: filtering software makes it impossible to get to Facebook, Myspace, JDate, and any number of other sites. So I did them a favor. In return for documenting how to connect to their internal system from a Macintosh running OS X, they will try to turn off their damned filter for patient/guests. Since we have a special login, it should be possible. And, no, I don't do porn, except for some pictures of me I'm not going to post :)

Off Topic: My Grandfather's Ties

As a rule, I am not sentimental at all about, well, things. Or much of anything else, for that matter. I tend toward the existential, which has, over the years, gotten me into much trouble with my loved ones, especially those of the female persuasion.

But there are two things that are very special to me, and I want to show you one of them.

On the left is quilt made from my maternal grandfather's neckties. Click on it for a large view. I hung it up today, after wanting to do so for years. It took a while to figure out how to display it without any possibility of damage.

Below on the right is an inset of the quilt, which, if clicked on, will give you a good view of this fantastic thing.

My grandfather was as close to being a great man as our family has produced. Although born in extreme poverty in a holler in western Kentucky, he rose to be mayor of one of its important cities (Center City), and later became the head of what is now the United Mine Workers for Kentucky, leading a major strike in what is sometimes referred to as The Troubles of 1924.

Unfortunately, he lost the strike, grabbed my mother in the dead of night, and escaped north into Indiana. Later he testified before the US Congress about the strike and his role in it (apparently, about why the strike was lost). He stayed out of union politics after that.

He was a natural politician and a lady's man. When he died, there were fifty-five pairs of shoes in his closet and more ties than anyone cared to count. The ties were turned into this quilt by my aunt Jean.

My grandfather, Lonnie Jackson, was a good man, too. He was the first union leader in the mines to treat blacks as equal members, for which he was threatened many times and needed a team of bodyguards. He remembered everyone's name, their spouse's name, the names of their children, and everything else, which is the prime gift a great politician must have. My mother had it, too. Me, I can't remember my own damned name, let alone that of anyone else. When he died, there were four hundred people at the funeral.

I didn't want to go into the hospital for the transplant without having hung up the quilt, even though there are far more consequential things I need to do between now and then. Here's where the quilt hangs in my house today:

In articulo mortis

Barring unusual complications (e.g, renal failure, resistant virus), most of the aSCT process is routine. There is, though, one moment in which the risk is high, and that is when the frozen stem cells collected earlier are thawed and reinfused.

The day before, they hook you up to an infuser and pump in the Melphalan. No big deal, even though it destroys the bone marrow. The next day, though, an odd thing happens. Before the infusion of the stored cells, the room starts filling up with doctors and nurses. They mill around as if at a cocktail party, chatting with each other about nothing much, almost looking for the canapés. A few minutes after the infusion starts they all melt away, going about their usual business.

So why were they there in the first place?

Believe it or not, the cells, when frozen in liquid nitrogen, are preserved with DMSO. That's right, horse liniment. Apparently, adding DMSO makes it less likely for cells to rupture as they are frozen. Definitely an idea from an out-of-the-box thinker, but it would have been better to find something else.

The problem is some people react to the DMSO with anaphylactic shock. This is not a good thing for a couple of reasons. First, it can kill you right then and there. Secondly, you need the cells to be infused to survive—what happens if you can't use them?

Which is why there are so many doctors and nurses milling around, just in case. If one is going to respond badly, one will do so at once. So after a few minutes, everybody goes back to work.

I should ask my doc about these things.

But I can tell you one more story. The mother of my former housekeeper had to have such a transplant a few years ago. She had the kind of horrible reaction I'm describing. Eventually, it killed her. I believe that when it came time for me to have my first aSCT in 2005, the memories of the death of her mother caused her to emotionally pull away from me. I lost her as a result.

These fragments have I shorn up against my ruin

Today the reality of what is about to happen sunk in: a call from Cindy, the Transplant Coordinator, informing me that I am scheduled on the 25th to have the central line (venous catheter) installed. That’s when the clock on my transplant starts.

Not only is this a milestone on this, my second transplant, but also it is the beginning of the process I hate the most, the loss of the illusion of control I have over my destiny.

Once I’m tethered to an infusion pump, once I’m in hospital, the doctors and nurses will be doing their level best to get me through it. But that’s not my fight. It’s hard for me to even know how that fight is going. I have quite a lot of knowledge of a very narrow bit of medicine, Multiple Myeloma. But the transplant really has nothing to do with myeloma. In a transplant, the doctors are concerned with the many possible complications, from acute mucositis to failed kidneys, opportunistic infections, hydration and feeding, and so on. I know nothing about these things.

My fight is to try to hold on to my sense of self and, especially, my sense of humor. Reduced to a set of lab tests tethered to a tree of infusion pumps, how can I continue to be me?

The last time, I failed almost completely. After about a week, I could do very little except suffer and beg for Ativan.

This time, instead of trying to understand what was happening to me, I’m taking a different tack. Greene Music, the local Steinway dealer from whom I bought my concert grand, has donated a Yamaha Clavinova for my use for the duration. Although electronic, the piano is playable, so I’ll be able, on good days, to practice. Maybe, with my earphones, I can shut out the blare of pumps and the hepa filter (which is bigger than a washing machine and louder than a jet). If I can lose myself in the music, perhaps the great ones will visit me, like they do when I’m home and tuned in to their wavelengths. By losing myself in music, perhaps I can hold on to myself.

There is a very good grand piano in the lobby of the hospital that is played by local artists every Wednesday after lunch. The rest of the time, it beckons to me. When strong enough, I enjoy playing for the passers-by. Last time, I wasn't strong enough often enough. The Clavinova is a godsend.

I’ll have broadband, too. The hospital recently installed a wireless system, although it does come with a warning to minimize its use. As if! So I’ll also have broadband through a wireless modem from my cell phone company. That’s two ways I can at least stay connected to the world I normally live in despite being in solitary confinement.

Once the broadband is working, I can access a thing called a Slingbox installed on my TiVo digital video recorder. Normally, hospital TV is a small wasteland consisting of CNN, QVC, and fuzzy versions of standard-definition network channels. But I have hundreds of channels at home and am a devotee of every damned one of them! Slingbox, through the broadband link, will let me watch what is recorded on my TiVo from anywhere in the world, including the hospital fifteen miles from my house.

Last time, I never quite succeeded in getting my beloved New York Times delivered to my room. Usually, I begin my day with a couple of hours of reading followed up by the legendary Times’ crossword puzzle. If the hospital delivery system can’t figure it out this time either, I’ll have a portable printer that will let me at least print out the key articles and my beloved crossword puzzles.

And I intend to keep up this blog not just to record the events for posterity, but to stay as close as I can to my friends who may be too distant to visit me.

You will be able to judge whether or not I succeed at being me despite the pressure to dissolve into oblivion.

An excellent day

**** Note: if you don't see newer posts that this, it's because I gave out the wrong link. Click here for newer posts.

Today I'm not going to add to my list of unintentional suicides, because for one thing, my brother Joe made it to his date with a pacemaker and has come out bionic.

In fact, it has been a glorious day.

1. My daughter Bess took her first step toward reconciliation with me in 18 years! There never was a good reason for the estrangement and I am delighted to hope that before too long the senseless wall between us will be completely torn down. Of course, I did have to lay the mother of all guilt trips on her, but it was honest and she had a heart.
2. Joe got his pacemaker. The next time he climbs his goofy spiral stairs he'll survive it.
3. My niece Jordan, who lives in Fla, wants to be with me to help with the aSCT
4. My aged cat, Yeti, appears to suffer only chronic inflammatory bowel disease. He starts on pred soon, should fix him up. It wasn't lymphoma, I believe.
5. My blood tests look ok, with a normal white-cell count. I have to wait for the cancer tests until later in the week, but pulsing dex two days a week at 20mg seems to be doing enough to keep me ready for aSCT.
6. I seem to be acquiring a new friend, Luciana, who is very bright and quite tolerant of my situation. I can't wait to meet her!

So, nothing dark today.

The Captain

The Captain. Bob had been a Navy Captain, aviator variety. He was on Halsey’s team in the pacific, and at one time was qualified on more Navy aircraft than anyone else of his rank. He had been retired for years, and constantly complained of the dumbing down of medical benefits, especially when forced to go on CHAMPUS. I made the terrible mistake of marrying his psychotic daughter.

Maybe there was a co-pay? He was a cheap bastard! I don’t know, but he avoided physical exams like the caribou avoid wolves. When finally forced to be examined, it turned out he was a plus-five diabetic. They showed him the syringes, drug vials, and monitoring equipment (as they showed the instruments of torture to Galileo to get him to retract?), and he balked. Isn’t there a pill I can take? Yes, but this is serious and you have to get this under control as soon as possible.

He opted for the pill, which I believe was called Ornaze, or something like that. In the year or more it took the pill to work, the disease tore him apart. He had to give up tennis because of severe neuropathy, and was cold at night from poor circulation. His amazing vision, the best I've witnessed, started to deteriorate. Despite knowing better, since the material he had been given specifically warned him against this, his cold feet kept him awake, so one night he got out a heating pad, wrapped his feet in it, and went to sleep.

When he awoke, he had burned his feet. Rather quickly afterward, his right big toe developed gangrene and had to be amputated. That caused an air embolism that traveled to his lungs and killed him.

All because he couldn’t stand the sight of needles? I ask you, as with Jane, was this a natural death or a suicide? I truly miss that fine man.

Why do so many kill themselves?

I don’t mean that they are deliberate suicides: far from it. Yet I have known many people, including some quite close to me, who had no intention of dying but who I firmly believe would have lived much longer had they been able to take care of themselves rationally. Seemingly normal, intelligent, educated people, when confronted with serious illness, often lose their balance and hard-earned good sense. I often see childhood issues, long submerged, roar back to life, complicating decision-making.

Putting two and two together becomes more difficult. Patients sometimes forget, for example, that multiple myeloma is a cancer of the immune system. The immunoglobulins that in a healthy person protect him from illness in our case are malignant. When we get a significant infection, like the flu, the immune system goes into overdrive in an attempt to cure it, like that of a normal person, but, in myeloma, this response increases the number of malignant plasma cells (by sending a signal out that they are to stay alive and productive longer than they normally would), and increases production of malignant immunoglobulins.

This is not a good thing. We don’t want our bodies to do what they normally do. We’d rather use strong antibiotics, anti-virals, and anti-fungals to suppress infections before the immune system kicks into high gear. We need to avoid situations where we’re likely to pick up such infections in the first place.

So why are there so many discussions among patients with myeloma about taking supplements that “strengthen” or “boost” the immune system? I tend to be tart in response, pointing out it is their immune system that is cancerous, and that the worst thing that could happen with these supplements is that they might actually work! How do they know they aren’t strengthening the cancer? (I can still hear the imploring voice of a friend of mine, who desperately wanted me to drink some vile concoction called “wheat grass juice.” He died the following year of a massive coronary.)

Don’t tell me magical thinking is an ancient relic. It is alive and well and living right here among us.

I will present you a few examples of people I knew, may they rest in peace.

Jane had familial hypercholesterolemia (inherited high cholesterol) and, in later life, very high blood pressure. Fortunately, her high cholesterol in itself didn’t seem to damage her, but with pressure of at least 240 over 140, she could stroke out at any second.

Fortunately, she responded well to common hypertension pills. Unfortunately, she was the daughter of a Christian Scientist, who instilled in Jane from an early age the idea that illness was G-d given, and that “taking drugs” worked against G-d’s plan. No matter than Jane was completely atheistic in adulthood. Deep inside she felt that taking drugs was bad.

Most medications and vaccinations she would simply refuse. When pressured into taking a drug, often she’d take just one, complain bitterly about how the pill made her feel, and then stop. She was deaf to the argument that side effects often quickly diminish with adaptation.

Yet at the same time, supplements were to her something other than drugs, so she could take all of those she pleased, and did she ever! She consumed fistfuls of supplements, including long-term, high-dose vitamin E, which eventually eroded the signals in her heart so that she required a pacemaker. Yet still she would not cut back on her supplements.

One day she decided to give up all of her high blood pressure pills because they “ruined the quality of her life,” and that she’d done fine without them, and that besides she had her supplements.

Of course she stroked out soon thereafter. So, was it a natural death or suicide? I am convinced that if she had simply continued to take her pills, she’d likely still be here.

Two more examples to follow.

Off Topic: My cat shames me

It was raining today, but something odd happened. My seventeen-year-old white cat, Yeti, who hates the rain, wanted to go out. He has sciatica, arthritis, is going deaf, and is having trouble with his hind legs. Why out?

But there was was a lull in the rain, so I let him out, and watched as he wandered over to the tiny pond. What did he want there? Was he fishing?

Nope. He was drinking. Why are you doing that, I ask the wall. Then the truth crashed on me. I checked, yep, the cat watering thing had run dry, I don't know when, and he can't jump up on the toilet.

Note to self: don't get so wrapped up in this cancer nonsense that your cat can shame you!

A sign on a guidepost

I'm writing this blog as a stream of consciousness. I know some of what I am going to write before I do it, but I hate being too tightly wrapped, too self-controlling, up front. That's the job for editing later.

Often, I write about people I know. That's tricky, especially since they might discover this blog (because, probably, I sent them the link) and find passages about them, at times highlighting discomfiting observations of how they handled the challenges with which they were presented. For that reason, I'm trying very hard to wrap myself up tighter than usual when writing about my friends. And of course I don't identify them personally.

But also, and this is the point, even though I wrote the first post a few days ago, I am revising it whenever something I dashed off strikes me as incomplete, wrong, misleading, or pointlessly revealing. I think the whole thing is an evolving process. Writing is, after all, the method I use to think. It evolves. And so will this blog, hopefully to the benefit of those who face these kinds of decisions and procedures.

And if I am found murdered, be sure to ascertain the identity of the people I write about :)

A little timeline

I was diagnosed in the early summer of 1998 via a procedure called a "CT-Assisted Needle Biopsy." While face down in the ring of a CT machine, I got to watch on a monitor as an eight-inch needle was inserted three inches into my pelvis. Did I mention how painful that was??

I learned I had the disease when my pelvis broke at the airport. I had no idea what it meant, but for the first time, I couldn't get up. Strangers had to help me. I managed to get home, felt a little better the next day, and went to my first-rate ortho guy two days later. He looked at the x-rays, said, shit, I can't handle this. He sent me to the best cancer surgeon in town. Things move fast when ugly stuff is on an xray.

As it turns out, the disease had been smoldering since at least 1985, because I have an unusual blood marker, alkaline phosphotase, which is always elevated in me when the disease is active. It is a kind of measurement of on-going bone damage (actually, a signal to the body to make new bone). Not everyone has such a marker. I went to my old doc's files, discovered the first signs of the problem in the earliest records. So I had what is known as indolent myeloma. It would become active, eat a little bit of bone (from the marrow out), then go dormant. Until it finally broke through.

I had six weeks of radiation for the lesions in my pelvis and for pain in my lower back. The story of that part is in the book I'm writing. The chapter is called Acceptance.

I was on heavy duty pain killers, like oxycontin, which I hate. After a few weeks I was bleeding from nearly everywhere, couldn't sit down (which makes performing some bodily functions quite difficult) and couldn't stand up much either.

For a while I was afraid I was going to die. Then, after six weeks, I was afraid I wasn't.

My stem cells were harvested in December of 1998, but at that time a paper was published by the French that showed that early harvest followed by transplant later on produced the same or better results than when done immediately. So I managed to delay the transplant until the fall of 2005, reasoning that if I got the same result (survival) in 2005 as I would have had in 1998, I'd be seven years better off. That's how it actually worked. Not too many have followed that path, but, then, I'm still here.

On the way I pioneered what Dr. Brian Durie, the MM specialist, refers to as "The San Diego Treatment." I picked up the idea from a couple of geniuses (Judah Folkman, Robert Kerbel) who discovered that chemotherapy, when given in small daily doses, worked better than when given in the traditional way (huge infusions, long time for recovery, in which the cancer could rebound faster than the patient). It took a while to get my onc to agree, but I started on daily, low-dose Cytoxan, which not only bought me five years, but gave me long periods of remission in which I could behave perfectly normally, no drugs at all. Few side effects either: dry skin, thin fingernails. Never even lost my hair.

So then there was the transplant, which kept me in hospital for seventeen days, and which I'm not going to rehearse for you here since we have another coming up that will be fresher and complete. Let me just say, it was extremely uncomfortable, but it wasn't gruesome for me. Not that time.

The transplant bought three more years. The doctor expects a similar result this time, but no one actually knows. I don't myself believe it, but I won't object if he's right and I'm not. Transplants of this sort don't cure in my disease because of two reasons: the stem cell harvest involved is often contaminated with cancer cells, and when the doctors try to destroy the marrow, they don't get it all. The residual cancer cells that survive the ablation are advanced along their evolutionary path, which is why, when the cancer reappears, it is more difficult to treat than the one that was stored in the stem cells that were infused during the procedure. Which translates to a shorter period of remission followed by an even nastier battle.

One just has to roll the dice and take the consequences. The quality of prognostication is a huge problem in this kind of transplant. Some people are disease-free for years, some more than ten, others get little or no benefit, and it is not easy always to tell in advance who will get a benefit. Which is why it is a treatment of last resort.

So I've caught you all up.

A before picture

This is a picture of Lonnie with Lonnie, some 54 years apart....

[click on the picture for a larger view]



And my son, which you can compare with the painting:

Coming together

Today, the lovely and gentle Amelia, who runs the housecleaning service I've used for years, has gotten the agreement of the lady I'd like to be the day person, Yvonne (although I'm not sure of the spelling of her name). We will have a 3-way sit down on Tuesday, then the training begins. Did I mention that she's beautiful, smart, single, three kids, and lives in Tijuana?

We don't have a night person yet, but we don't need one for at least six to seven weeks.

The most punishing procedure in all of medicine

There was an article in the New Yorker from 1998 describing the type of autologous stem-cell transplant (aSCT) that I'll be having, only it was for leukemia, a close cousin but still a quite different disease.

A Healing Hell