A Reason for Hope!

I perked up considerably this week when I heard that my young donor has agreed to donate again! In fact, she will be making the donation on the eighth of November, and the cells, on ice, will be flown to San Diego the following day where they will be divided and frozen. So, in about a week I will receive my first lymphocyte infusion (DLI). Cure is still a possibility!

We do have sufficient cells left over from last year's transplant for one big infusion, so my continuing survival wasn't entirely riding on the decision of my donor. However, a one-time, big infusion (which is how donor lymphocytes were given originally) could very well have given me severe graft-versus-host disease — even to the point of being fatal. While we have to have GVHD to have a graft-versus-myleoma effect, the risk of a big dose is unnecessary. If given periodically in lower doses, DLIs are just as likely to produce a response but are much safer. We could have gone with the Big Dose weeks ago, but I thought asking for another collection was worth the risk of delay. I wasn't terribly worried that she (my donor) would decline to donate a second time: people who have actually donated, and not just registered their intention to do so, will almost always do it again if needed.

I must tell you, my life has been bleaker and more desperate in the last few weeks. The reaction to Velcade and Decadron, my reinduction chemotherapy, has been horrible. By the end of the cycle, I had deteriorated so much that I was predicting to Ivonne that I would be in hospital within days: I had become so weak that I could do little but lie in bed; neuropathic pain forced me to take six times my usual dose of pain killers (which blunted but did not control the pain); I did not want to eat; I would sleep for a few hours, wake up for an hour or two, then return to sleep. Because of an episode in early 2011 of tardive dyskinesia  after taking a tiny bit of Seroquel, I no longer am able to use a small dose of a major tranquilizer as a sleep aid. Eyes Wide Open!

The worst part was going through the agony of chemotherapy with little hope of success. My cancer had become resistant to everything but dangerously-high levels of dexamethasone by 2009: why should it be anything other than more resistant now?

And there's the surprise: this week's measurement demonstrated a significant drop in the level of cancer. A chemotherapy that failed me years ago is now working. This is wonderful news because the likelihood of achieving remission after donor lymphocyte infusions is greater if you demonstrate a response to reinduction chemotherapy!

The right eye is damaged. Click for larger view.

Not all the news is good, though. Myeloma has attacked my right optic nerve in the form of non-arteritic anterior ischemic optic neuropathy (AION), a devastating disease leading to blindness. I have some vision at the moment, but not much. The left eye has not been attacked thus far, but both eyes are often affected. If I make it three months without losing the left eye, I will probably be safe. The only thing that can be done to protect my remaining eye is to fight the cancer, which is something you can safely bet that I'm doing.

Since recently accepting that I had fallen out of remission after the allogeneic transplant, I have had to also accept the likelihood my impending death (median survival at progression, 4-6 months). I've been addressing all of the pressing things a dying person has to do to make life easier for those he will leave behind. I've been once more thinking about my Bucket List, although it is much emptier now than when I first wrote about it years ago. But the sadness was inescapable. I had the the sense that most of the things I thought important to do would be for the last time. For example, I've been showing Ivonne my favorite movies (Casablanca, African Queen, Lawrence of Arabia, etc.) being quite aware that I would never be seeing them again. I've been teary. I've worked hard to be a good father and husband, protecting my family and guiding them. I've been in the arena with Death for so long now I've become inured to my inevitable defeat: I've fought the best fight I could, which is comfort enough. I grieve rather for the sorrow and hardship I will leave behind.

Well, screw that! The game's not over yet! The oppression on my heart has lifted. Cancer, I'm ready for you. Take your best shot! You are MINE!

Border Tales, Part 1: Advance Parole

The little brown man in the dark blue uniform stared at me with steady eyes that revealed absolutely nothing: they very well might have been buttons sewn onto his face. He was small in stature for a Migra (Border Patrol Agent), and old in a weather-beaten way. Despite his stature, I could tell he could put me on the ground in two seconds without breaking a sweat. He said, "There is another paper." He stared at my face intently, without revealing anything it all, perhaps not even blinking, without impatience, stoically waiting for my response. Time stopped.

My thoughts were racing: I said, "This was the only paper we have!" His response never varied: "There is another paper." He never took his eyes off my face nor revealed anything in his. My fear was building as I tried to understand what this mistake might mean.

Ivonne, who was going through the immigration process (torture?), had just received a notice of immense importance to us, her Advance Parole. No day was more eagerly anticipated by us than this one. Finally she could go home.

I knew nothing about immigration before marrying Ivonne. I just remember all the war movies that ended with the soldier telling the immigration officer, this is my wife! She's French! And the officer saying, "Welcome to America!" That image is now quaint. Today the process is expensive, long, and dangerous. From the first moment you file the paperwork, both of you are considered criminals until proven otherwise. Do you like the term, "Advance Parole?" Paroled from what? Some form of imprisonment?

Yes, exactly.

There are two ways a family member can immigrate to America. The longest, most expensive, and most dangerous, is called Consular Processing (CP). In CP, all of the investigations and processing must be done in the foreign country. Further, there aren't that many places in a foreign country where the processing can be done. For those who live near the US/Mexican border, that means long trips to Ciudad Juarez, one of the most dangerous cities in Mexico, where the US Consulate and associated medical clinics do the processing. It can require years of separation between you and your bride. I didn't have years.

The other available way, if the alien is legally in America, is called "Adjustment of Status." (I am becoming annoyed at referring to my lovely wife as the "alien:" she is not green and does not have eyes on the end of stalks.) In Adjustment of Status, along with the form I have to file, the I-130 requesting my spouse be allowed to immigrate to live with me, she can file an I-485 for herself at the same time that that says 1) I'm already here legally;  2) when you decide on my case (Lonnie's I-130), I ask La Migra to adjust my status to that of Permanent Resident. All processing takes place in America, and it's cheaper and quicker.

That's how I brought Ivonne over. She had a long-term tourist visa (B2). This visa is for people who live on the border who need to cross often for shopping, visits to relatives, to doctors, and so forth. They have to own property in Mexico for several years, have a solid work history, pass criminal background checks and have a clean immigration history, demonstrate strong family ties to the border city in which they live, and so on. They won't give you a visa if they think you might disappear into America with it.

So my new wife and I could stay together until her status was settled. But along with this process comes a terrible restriction: under no circumstances can she leave the country before her case settled. If she did, her visa would automatically expire and be confiscated and she would not be allowed back. Her processing would revert to Consular Processing, which would delay her entry for years.

A few weeks after we were married, for a period of about four months, she stayed here with me. The problem with that was that her father in Tijuana has a couple of chronic illnesses, and her four children were there as well (then aged 11, 13, 14, and 15)! Although all but one had visitor's visas, and could occasionally visit their mother here, such visits cannot substitute for the care they really needed. If anything went wrong, what would she do? Could she stay here while, for example, her father died or her children were dangerously sick or seriously misbehaving? Where would the children live? Who would look after them? How would they go to and from school? Do the laundry? Feed themselves?

We were very lucky. Nothing truly bad happened. Ivonne's enormous family took care of the children, their grandfather made sure they got to school (and bought them a lot of fast food), and no one was hurt or seriously ill during that time.

The separation was about to end when the magic paper arrived, the Advanced Parole. She was given permission to leave the country (USA) and return as needed until her case was settled. She could be with her children again! I had set up a video link so that they could see each other and talk, but there are no digital hugs over the Internet. It was a difficult time.

The reason I was staring at the little blue-uniformed man was that this was our first attempt to use her new privilege. We decided to surprise everyone on New Year's Eve day by first finishing the process (there are things that have to be done at the border before she can just come and go), then crossing a second time to be with the family.

We parked the sedan by the McDonalds on the US side, walked over a long, grueling set of bridges and ramps, then waited in the line to enter the US visa office on the Mexican side. I remembered to bring my cripple sticker with me, so we were allowed to go to the front of the three-hour line where we ran into the little brown man who looked at what we brought, then asked, "Where is the other paper?"

Horrors flooded my mind. We were on the Mexican side of the border with inadequate papers. They might not let her back into America. We'd have to start over with Counselor Processing, adding months or years of virtual separation and thousands of dollars to the process. All the frightening months of enforced separation which we thought were behind us would have been for nothing!

While these thoughts were going through my head, the little man never blinked, never took his eyes off of me, never said a word. I was practically swooning and could feel despair rising. Finally, after long moments, I turned to him and said, with resignation in my voice, "What do we do now?"

This was apparently the right answer, or, rather, the right way to answer. He came alive, took me by the arm, and pointed to a bench across the way: "Go, sit on that bench!" I was confused, bewildered, so he repeated himself: "Go, sit on that bench and wait." (It should be the motto of the immigration process: Sit Down, Shut Up, and Wait!)

As I wobbled off to the bench, he took Ivonne into the windowless building. It was a cold, concrete bench that gave the impression of never having been used. My future was flashing before my eyes. I was about to lose the luckiest and best thing that has ever happened to me. Would she be deported, her visa confiscated? Would we have to start over? We were newlyweds—when could we possibly be together?

What seemed like hours passed with me in this horrible state, although it was probably more like twenty minutes. Filled with fear and despair, all I could do wait. I remembered the other sheet of paper: it was a duplicate of the one we brought. I thought it was for our records! Ignorant fool! Stupid!

Then, looking for all the world that nothing important had happened, out she came, smiling and calm, as she always appears on the outside when in the presence of La Migra, and as I stood up to walk with her across the border for the first time. I said, "What the hell happened?" She told me that the little man took her to a station where the papers were to be processed. The woman looked over what we had and said, "Where's the other paper?"

The little brown man replied, "Make a xerox!" then wandered away. That was it. We were free, except for a bit of final nonsense at the actual border line as final checks were made.

We walked to the car, then crossed much more easily a second time to go to her father's house,  where no one was expecting us. I sat in the car for a time and simply watched as Ivonne and her son, Ruben, each other for the first time in months. Ruben had grown at least two feet and was now, much to her surprise, as tall as she. They stared at each other. She saw a bump on his chin, and said, "You have a pimple." To say that the reunions were, well, "moving" would be using an wholly-inadequate predicate adjective.

We spent a long time with them: it was the first time we had been all together, and I was to meet Ruben, her son, for the first time. I was reminded of The Lord of the Flies at the moment that Brit Navy finally rescued the children: for a moment, the children couldn't understand what had happened, and when they finally realized they had been rescued from having to govern themselves, as if they had been adults, they started to cry. They could be children again: their mother was back!

Well, only for a few hours. But now she could travel to Mexico as needed to do laundry, clean house, make dinner, help with homework, settle disputes, all the things that make a child's world feel safe.

I told the children, in my very poor Spanish, that we would now be bringing them all to America as soon as possible. Ruben, the one boy, is a quiet sort, often seeming to be not part of the group, not perhaps even thinking. But deep inside was a great fear: his father had lost his visa, or sold it, so perhaps he wasn't going to be able to come to America with the others.

By way of explanation, and I hate to sound racist, but little Mexican boys do look a lot alike. If they have a visitor's visa, it can be sold to someone, a Coyote, who finds another boy that looks very much the same. They cross the border, $3000 changes hands, the visa is returned to the Coyote, and the process is repeated until they are caught or the visa expires. We suspect his biological father sold his visa. Ruben was stuck in Mexico and had to endure Consular Processing.

Deep inside, he was afraid that he would be left behind. I told him not to worry, the problems with his paperwork in Mexico meant nothing. "I am an American, you are my step-son, I will ask for you and they will agree. Nothing can happen here that will prevent your being with us. There's nothing your father can do to stop us." When I explained this to him, and my meaning sunk in, his whole body shuddered as if he were having a convulsion, as relief flooded his body. I even gave him my promise that he would be the first to cross. Mi promiso! That turned out to be a bridge too far: he was actually last. As it turned out, it took a lot longer to bring him to his new home than any of us had imagined, and the process was costly and dangerous, but that's a story for another time. Today, we are all here in Scripps Ranch, all four are attend great schools, and, as of about a month ago, they made the psychological shift: San Diego is now home for them; Mexico is where they were born. (Can you hear me sigh in relief over the keyboard?)

PS: If I had answered La Migra in some other way, and she had been denied admission and had to restart the with Consular Processing, I would probably not be alive today. When we married, I was in partial remission and doing fine, but two months later it was clear that I had lost all control of the cancer and had little time left. The doctors would not have offered me the allogeneic transplant had I not had an adequate support system at home for my recovery. Fortunately, Ivonne had shown in many ways that she could and would take good care of me, so that never became an issue, insofar as I know, in the decision to put me into a research program for allogeneic transplant in myeloma. I needed more care than any of us had envisioned, and she gave it to me.

Steve Jobs Delayed Surgery in favor of Internet treatments!

Steve Jobs infuriated family and doctors by putting off surgery in favor of alternative treatments. For more than a year, he relied on "fruit juices, acupuncture, herbal remedies and other Internet treatments." While being one of very few people who have had their cancer's complete gene sequence identified, he dabbled in medical voodoo.

Even the most rational of us, in the face of a terrifying diagnosis, can act like fools even to the point of foregoing or delaying treatment. I have known well some who shortened their lives by avoiding "chemo" or surgery in favor of treatments of no proven value (and, in the case of immune boosters in Myeloma, may have intensified their disease). My friends have tried all-fruit liquid diets, coffee enemas, magnetic "alignment" machines (Rife), and ruinously expensive quack treatments in Tijuana, just to name a few.

The challenges of effectively fighting a dangerous cancer are numerous. If the cancer is rare, average doctors are often unaware of current research and treatment and still administer VAD, or MP, to a younger patient: they look in the book written years ago, and do what it says. The disease is occult, so we often ruin our quality time obsessing over medical tests during periods where there is no need for us to do so. But the biggest obstacle is the fear of dying: we wouldn't be human without that fear, but allowing it to drive the decision-making process must be overcome. When a disease is incurable and universally fatal, we, as patients, have a greater right to discuss treatments with our doctors and make choices than do those with common, curable illnesses: this is because all of our alternatives are, in some sense, bad. Pick your poison (rationally).

But too many are like Steve Jobs. Timely surgery might not have helped, but delaying it certainly did not help. Why would an otherwise brilliant man act so stupidly? He let fear (and, perhaps, denial, the other great mechanism for self-defeating behavior in cancer) get the better of him. My book, if I can live to finish it, is about how to embrace fear squarely and disconnect it from medical decisions while also fighting cancer with evidence-based medicine. It suggests ways to improve ones remaining quality of life by giving the cancer as little time and effort is possible.

Right now, in my personal battle, QOL has become an issue, mostly as a result of doctor indecision (but also due to Velcade, dex, and a stupid cold). I did my homework, I know what I want to do, but getting it through the tumor board is proving to be challenging. While waiting in suspense through this infuriating bureaucratic delay, my good time has diminished, but, hopefully, in a week or so, the course will be decided and I can return to fully living my life.

Here's the story:
http://tinyurl.com/3hhxzl3

New Book Details Jobs’s Fight Against Cancer

www.nytimes.com

A 630-page biography on Steve Jobs also includes previously unknown details about his romantic life, his marriage, his relationship with his sister and his business dealings.

Seconds to go! Time for the Hail Mary pass!

After the usual tests, plus a bunch more, it became clear that my new immune system can no longer contain the cancer. The speed with which my markers are deteriorating is frightening. The cancer (FLCs) jumped by a factor of 1.7 in one month and is accelerating. Pain from neuropathy is also worsening: I needed only one Vicodin 5/500 a day for pain, but now I need up to three. And if that weren't enough, I'm losing the sight in my right eye due to myeloma light chains attacking the right optic nerve (which isn't brain cancer). I'm not even going to mention ED!

This chart begins after the allo. The kappa low point was 

15.3. Today it is 141. Normal is 1.94.

For those of you who understand lab tests, alkaline phosphatase is 195 (below 126 is normal), Beta-2 microglobulin is 4.5 (normal 1.7 or lower), and my IgA is low. Potassium is low, too.

The cancer is no longer under control; in fact, insofar as I can tell, it is not even being hampered in its exponential rise. In essence, the new immune system has "decided" that these malignant plasma cells must be normal and has stopped fighting them.

What does this mean? From survival charts I've put on the blog before, and after studying more recent data, it will be rare if I survive another six months. I am going to try once more to shove the Beast back into its cage, but the odds are against me this time. I'll tell you what I'm doing a little later in this post.

I've written extensively on this blog about the End Game.  You've reached the end game for sure when your doctor says, "I'm sorry, there's nothing more I can do for you: I will be calling hospice immediately." Of course, if you've been awake and aware, you know it is coming, and from that time on, you're in the End Game even if your doctor hasn't yet said these hopeless words to you. You might be working on your bucket list long before you actually have reached the End Game, but it will in all probably change when you've passed the anticipation stage and are firmly in it as a player.

Of course I was delighted to put that subject behind me when I responded to the transplant in June 2010. Now I'll have to take it up my Bucket List again and, perhaps, finish it. If you want to catch up with my musings on the subject, here is a good place to start. There are also a few posts about my Bucket List. This one too. In the next few weeks I'll be revising my list and will post it, most likely, as My Final Bucket List, which may include the things that were on the list that I achieved or abandoned, as well as any new things. (I really should see the damned movie, but I can't seem to get around to it. I have the idea.)

For a while, two weeks ago, I suffered from iatrogenic whiplash. My doctor swept in with a cheery, "Haven't we cured you yet?" He was all for donor lymphocyte infusions, DLIs, which are direct infusions of the same cells that were collected from my young female donor for the June 2010 allogeneic transplant (NMA/RIC, or non-myelo-ablative reduced intensity conditioning allogeneic transplant). It appears that we have one bag of her cells we didn't use, and that bag had the right number for a one-time infusion. These days, it is usual to give lymphocytes in periodic, escalated doses, so several bags are collected of just the right size. After the first dose is given, there's a period of watching that may last months. When the effectiveness (or lack thereof) can be assessed, another, slightly larger dose is given. And so on. There's a clinical trial that proves that escalated dosing is as effective as one big infusion but is much safer. If we can't get new cells from my donor, then we throw the long ball with the big bag we have.

The whiplash came later, when the doctor came in, all down and stuff, and said he had been talking with the transplant board (in other areas, it's a "tumor board"). They didn't think we should go forward because there's little evidence of effectiveness of DLIs working when the patient is maintaining 100% chimerism. Which I am.

What that means is that a chimerism test demonstrates that all of my cells belong to my donor. Often the donor cells show up as a second chimer, especially at first. That's when DLIs are normally given, with the purpose of putting the patient into 100% chimerism. (Now you may be wondering, with a great number of malignant plasma cells from my old blood causing trouble, why they don't show up on the chimerism test? Answer: inadequate chimerism test for myeloma.)

In any case, by the next day I had found a recent journal article in Blood describing a clinical trial that proved that the degree of chimerism is irrelevant in the prediction of remission from DLIs in multiple myeloma. The proper goal of DLIs isn't to achieve complete chimerism, but to achieve remission! The old rules have the wrong goal. So we're on again.

I had let myself slip into patient mode when the transplant started. You see, an extensive knowledge of myeloma has little to do with what the transplant doctors have to know during the procedure. They worry about engraftment, infections, kidney function, pulmonary problems, things I don't know anything about. So I just relaxed into the presumptively-benevolent care of the doctors like a normal patient. I snapped out of that mode too late. We probably should have done the infusions last June, when it was clear that I was slipping out of remission. We should have built DLIs into the plan from the beginning so we wouldn't have to be going through this goat screw now to obtain them. I've spent the better part of the last two weeks downloading recent (and expensive) journal articles to support donor lymphocyte infusions for patients in my situation. There was a clear path forward. I explained it, justified it, and, now, were on it.

To make my dire situation clear, there's about a 12% chance of dying from DLIs as a result of acute graft-versus-host disease, and a combined 30% chance of achieving either PR (partial response) or CR (complete response). The rest of the responses vary from none to hellish GVHD.

Beween now and the first infusion, I'm doing dexamethasone and Velcade (by infusion for now, until insurance approves subcutaneous injection at home). One 10mg dex by infusion kept me up the entire night last night. I used to use a tiny bit of Seroquel, a major tranquilizer, to put me to sleep, but two years ago it gave me an episode of tardive dyskinesia, which in turn gave me the worst night of my life. Thank my lucky stars the episode ended about eight hours after it began. From now on, I can't touch major tranquilizers, so I have to stay awake on dex days (and nights).

Wish me luck. If I only get a partial remission, it may be enough to get me through to the approval of Carfilzomib, the latest and greatest imid for us. A complete remission could last for years, so I could start working seriously to get a job.

Eulogy for Ebbe

Ebbe Skov was diagnosed with multiple myeloma, an incurable, universally fatal cancer, in 1999, less than a year after I was. In such a horrible context, it was great good luck that I met him and his devoted wife Margrit at a local support group meeting. A difficult journey into a strange and terrible land is always easier with amiable companions, and he was certainly that for me: always cheerful, supportive, objective, and reliable. He belonged to a like-minded group of us who fought the disease together in a similar way: now, I’m the only one of us left.

We were scientists who fought our disease like scientists. Ebbe read every relevant journal article he could find; plotted the mathematics of his disease on charts and spreadsheets; and knew his options better than his doctor, whom he doggedly tried to educate. He did his homework, which many of us are unable or afraid to do.

Ebbe managed to be vigilant without being afraid, which is a rare accomplishment. I’ve never known anyone who monitored his condition as closely as he did, which, for him, was a requirement. While most of us have bone tumors which are easy to sense, because they hurt, his could be anywhere, symptomless: around the throat, over the heart, or in any soft tissue. He was regularly besieged by them.

Yet throughout the ordeal, I found his spirit to be truly remarkable. Fear did not bend or break him as it does so many others. He did not panic, nor did he feel sorry for himself: I never heard him say, “Oh, woe is me,”  “This is so unfair!”, or a bewildered “Why me?” Instead, he donned his armor, polished his sword, and went after the Beast with everything he had. He fought an heroic battle despite knowing he would eventually lose: a rare man indeed, a leader and an inspiration to the rest of us who must follow.

My theory is that the bravest and most successful cancer warriors have the support of a strong woman, and Ebbe certainly had that. Despite the heavy bludgeoning of fate, Margrit was forever beside him, loving him, lending her strength. As a result, he lived more than twice as long as most of us do.

My personal journey will be harder now without him. Good bye, Ebbe, dear friend!

Once more unto the breech, dear friends, once more

This morning I was up early despite having a restless night. My second-floor bedroom opens unto a small balcony. I listened to the birds at the feeder about ten feet away: it hangs from a nail under the eaves. Actually, what roused me was what I was not hearing: the raucous sound of finches, sparrows, doves, and the occasional scrub jay squabbling over the six prime feeder positions. (Although at first glance they appear to be fighting, their beak-to-beak pecking is stylized: they are careful not to do each other any real harm.)

Then I realized I hadn't filled the feeder last night. As quietly as I could manage it, I slipped out of bed, put on my shoes, and slowly and carefully opened the screen door: I didn't want to wake Ivonne. I keep a weather-proof box of black-oil sunflower seeds on the balcony. A full feeder barely lasts one day. I failed, though, to be sufficiently stealthy to avoid rousing Ivonne. But, now, after doing a full St. Anthony, the normal, meaningless, and quite satisfying sound of dozens of birds once more enhances my morning bagel and coffee.

I absorb myself in an article in today's New York Times that seems to herald the end of the manned-space era. A couple of weeks ago the Russian cargo ship, a Soyuz, crashed on its way to resupply the three astronauts who struggle, some would say vainly, to do meaningful science in low-earth orbit. For safety reasons, the leaders are discussing bringing them home. What do you think: if we come home, will we ever go back?

Reality is crashing in on the science-fiction dreams of my boyhood. What can be reasonably done has been done. We won't be traveling to distant planets, or warping time and space: we're stuck here and have to make the best of it. The landing on the Moon in 1969 was our high point as a species, literally and figuratively, a triumph of technology and imagination. Mankind had been wanting to go there since the first human looked up from the ground, agape, at the night-time wonder of it. We not only achieved that ancient dream, but, being Americans, after all, we broadcasted it live on TV. Nothing we can imagine could possibly top that, not even Texas' plan to show its executions on pay-per-view.

TREATMENT TIME
Hope is not a strategy. I'm not one to sit idly by, hoping that things will get better. But I'm also as prone to denial as anyone else, especially when the vicissitudes of life are largely resistant to my control. While I killing time and powerful space aliens in Duke Nukem Forever, my light chain numbers, which, for me, measure cancer activity, are rising. Take a look at my latest post-transplant chart:

Click above for bigger and interactive version

The red line, which is my kappa, is now at 84.8 mg/dL, the highest it's been since the transplant. The nadir, 15.3, occurred in March. For someone who, pre-transplant, withstood a spike of 2140 (normal is 1.94), I'm not rushing out to buy a cemetery plot, but I am afraid: once more I must work through the inner process of drowning it in the bathtub. To rely on hope would be expecting to see a spontaneous drop in the future: after all, as you can see from the red line, the value has risen and fallen on its own more than once since the allogeneic transplant. However, what I'm seeing now looks more like a trend than a seesaw: the numbers have been rising since late May. The faint black line is a computed kappa trend line: no complicated analysis is needed.

One of the most difficult challenges in fighting cancer, especially one that is generally incurable and usually fatal, is to decline to ride the prognosis roller coaster that careens from denial to despair and back, pausing at times for brief moments of elation. Not every change of state is meaningful: even when a change is meaningful, the normal emotions engendered by the swings don't help. Fear is cancer's natural ally. My slowly-proceeding book is, in part, how to disconnect the corrosive and often deadly effects of fear. Wallace Stevens said it best:

THE SNOW MAN

One must have a mind of winter
To regard the frost and the boughs
Of the pine-trees crusted with snow;

And have been cold a long time
To behold the junipers shagged with ice,
The spruces rough in the distant glitter

Of the January sun; and not to think
Of any misery in the sound of the wind,
In the sound of a few leaves,

Which is the sound of the land
Full of the same wind
That is blowing in the same bare place

For the listener, who listens in the snow,
And, nothing himself, beholds
Nothing that is not there and the nothing that is.

Ok, so shoot me, I was a Yalie English major.

It is necessary to be able to distinguish between change and meaningful change. Most of the time, as the emotional trolly follows the numbers, hauling us up and plunging us down, the whiplash is uphelpful. But as I stand in the full cold snow of Wallace Stevens, staring at the numbers, I have to conclude that I'm staring at a moment that calls for action. Knowing when you need to change course must be coupled with the other survival skill in the battle against cancer: being clear about what other treatments are available and likely to work. Everything else is irrelevant. There are a limited number of treatments (a handful); if you earlier had become resistant to a given treatment, returning to it later probably won't work; and clinical trials can waste precious time, often don't provide a benefit, and, rarely, can do actual harm. They are, and should be, the medical equivalent of a Hail Mary pass in football.

The battle becomes much simpler over time in that fewer treatments remain. At this point, all I have left is donor lymphocyte infusions (DLIs) and lenalidomide (because lenalidomide can fight the cancer without damaging my new immune system). But I became resistant to lenalidomide years ago, so why should I expect it to work today?

GVHD

Donor lymphocyte infusions will probably work, perhaps even to the extent of complete remission. After a long period of fighting, immune systems sometimes do the equivalent of redefining normal: they give up the fight, which is what is happening inside me now. DLIs will reinvigorate the immune system to destroy the malignant cells. However, while ratcheting up the graft-versus-myeloma effect, they generally also considerably ratchet up the graft-versus-host disease, which, for me has been thus far quite manageable. Take a look at how bad GVHD can get. Click on it for a really good look.

GVHD can attack anything: eyes, mouth (one of my friends lost a few salivary glands), toe and finger nails, GI tract, connective tissue, you name it. After DLIs the GVHD is usually more than mild and can be life-threatening.

The other downside is that steroids are the usual treatment for severe GVHD. If you've been following this blog, you know how easily steroids can drive me to the brink of insanity.

So, that's where I have to go next. In early September, my doctor and I will discuss going back to my donor for another shot at cure. I think he wants to try lenalidomide first, but that will take a lot of convincing.

The good news is that I won't have to endure once again the horror of last summer: four months in hospital; eighteen days in ICU; extreme weight loss; difficulty eating (even jello tasted vile); and life-threatening complications (I had pneumonia, kidney failure, deliria, heart irregularities, and a massive GI infection). I'd hate to have to repeat that experience. But, again, the DLIs are quite likely to work against the cancer, and, who knows, I might get lucky with respect to the GVHD. Yin and Yang, profit and loss, left and right, GVHD and GVM: no pain, no gain (or, as I say to my athletic friends, no pain, no brain).

THAT CENTER DIVIDER MOVED!
Today I am $16,000 richer and immeasurably poorer, after State Farm totaled my beloved Mercedes SLK320. I am trying to be philosophical about losing a car that provided the most fun possible to have on four wheels (although teens would not like the absence of a back seat). In pristine condition, with but 59k miles on the odometer, this 2001 beauty could accelerate and corner as excitingly as any stock car ever made: the horsepower to weight ratio was enormous. On top of that, I loved that it could switch from a being hardtop to a roadster in 23 seconds at the push of a button: I could do it at a stoplight if the weather changed. The inside was all leather and burled walnut: even the steering wheel was made of gorgeous wood.

I really don't know how I managed to destroy it. Was it a senior moment? My eyes have deteriorated considerably in the last decade, due to botched lasik in the right eye coupled with annoying floaters and a posterior staphyloma: maybe I didn't see the center divider because I couldn't see it in the shadows. I wasn't going fast, just normally accelerating from a stop light on an unfamiliar but complicated road, trying to make a turn. Wham! Oil on the ground. Au revoir, Mercedes.

When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put childish ways behind me.

With four children, what I actually need is a six-passenger car, like a Honda Odyssey, not the two-passenger babe magnet that I had. It's not what I want, it's what I need. Doesn't that suck! I hated wondering how, with the Dow Jones falling like a skydiver whose parachute didn't open, I was going to afford a down payment: now I have one. I could have tried to rescue the Mercedes from the boneyard, but it's time to do the mature thing. As a result, my inner teen is screaming.

Fate has a sick sense of humor. After diagnosis, when I could no longer work and was surviving solely on private disability insurance, a man who owned an air ambulance company whacked me on my motorcycle in 2003, putting me in a wheel chair for eight months and making me $1.6M richer. I had wondered how I was going be financial secure before the cancer got me. Thanks, Fate—next time, let me win the Lotto instead! (I did salvage the motorcycle: it's in my garage needing a bit of work. The trouble is, I'm getting to be too old and too slow, and the neuropathy in me feet is so bad, that I can't ride it safely except around the block. Ratz!)

Words of wisdom, the first from my Computer Science professor: "He who matures last, matures most." Well, I am today reaching heights of maturity that really and truly bite. Maturity is, after all, the consolation one receives from abandoning ones goals. But, more than that, aging coupled with the a prolonged fight against a deadly illness is marked by a succession of losses: work, which defines most men; youth, which spurs you to climb mountains and lane-split on motorcycles; the future becomes more confined and more restricted, giving the lie to Robert Browning's, "Grow old with me, the best is yet to be" nonsense; losing the sense that there's plenty of time left.

[Pow!] [Bam!] [Wham!]

Ok, after slapping myself around a bit, I am reminded about how lucky I truly am: a succession of near-miracles has made me happy despite what fate has rained down on me. First, I'm still here: isn't that amazing! Second, I am happily married to a beautiful woman half my age and, at long last, being the good father I couldn't be in my first marriage. Did I mention I'm adopting the children? Shazam, instant little citizens of the US of A! I haven't run out of ammunition in fighting the cancer. My mind is sound: recently I've memorized another Beethoven piano sonata, relearned the guitar (I was a folk singer long ago), and have written a good chunk of my book (which is turning out to be an autobiography). More than a year later I'm still weak, but I am lifting weights at the gym regularly. Ivonne and I are warm and successful.

DESTITUTION IN SIGHT
I'm well enough now to go back to work, and I need to: I have four teenagers who need braces and college educations! So I sent my résumé out into the world last month only to be greeted with a resounding silence. I'm practicing my technical skills ("Good morning, Walmart shopper!"). Maybe I can get an advance on my book (hahaha!).

Rarely is the financial disaster of cancer discussed: I think this omission is a matter of masculine pride. With disability insurance, Medicare, a small pension from General Dynamics, and the motorcycle settlement, I didn't need to worry about money: statistically, I expected to be dead long before I ran out of it. Yet, here I am, thirteen years into the fight with no end in sight, with a young wife and four adorable kids. What happens to me and my family when my house, which still has some equity in it, goes under water, my mutual funds tank, and my credit is exhausted?

I don't want talk about it. I don't want to even think about it. But ever looming in my mind is the distant specter of destitution: come visit me and my family under the I-5 viaduct at Mercy Road!

Ok, enough of the maudlin BS. I've been lucky thus far: something will come along. Some major corporation will have the good sense to hire me, my book will be a resounding success, and the DLIs will cure the cancer once and for all. And, yet, I am haunted by these words, with which I am sure you are familiar:

Stopping by Woods on a Snowy Evening

By Robert Frost

Whose woods these are I think I know.   

His house is in the village though;   

He will not see me stopping here   

To watch his woods fill up with snow.   

My little horse must think it queer   

To stop without a farmhouse near   

Between the woods and frozen lake   

The darkest evening of the year.   

He gives his harness bells a shake   

To ask if there is some mistake.   

The only other sound’s the sweep   

Of easy wind and downy flake.   

The woods are lovely, dark and deep.   

But I have promises to keep,   

And miles to go before I sleep,   

And miles to go before I sleep.

PS: My wife just told me that the Spanish translation of the title of this post reads: "Once more into the ass, dear friends, once more!"

A Letter to my Donor

Contact between a marrow donor and the recipient is tightly controlled. At this point, though, I can write to my donor just so long as the letter contains absolutely nothing that can identify me. This I have done, and I'm sharing it with you now.

Monday, August 22, 2011

My Dear Donor,

I have hesitated to write to you because, no matter how hard I’ve tried, I can’t find adequate words to thank you for saving my life. You’ve given me the greatest gift one person can give another. A spontaneous rescue, such as a bystander giving CPR, is a wonderful act, but donating in the way you did is, to me, an even greater act of generosity: without immediate motivation, you decided that donating was something important for you to do, and you made a considerable effort to do it. You won’t be written up as a hero in the local newspaper, like the quick-thinking bystander might be: yet what you did was greater—a deep, pure and unselfish act of the highest goodness.

I would not be alive today without you. Last year, I was nearing the end of a twelve-year battle against a generally incurable, universally fatal cancer. There was so much of it, there was no way I could have survived longer than a few months. Yet, here I am, more than a year later, looking great, weight-lifting at the gym, and making long-term plans. I wasn’t cured, but the cancer was dramatically reduced to a manageable level.

It took a long time to find you: apparently, and surprisingly to me, there was something unusual about my blood that made you hard to find. When you were found, and volunteered, they had searched for months and I had reached the end of my rope.

Of course, I didn’t want to die, but more than my survival was at stake: I’m married and raising four teenagers (three girls and a boy) who endlessly delight me. Although they are my step-children, I find myself loving them beyond all reason. One of my most unhappy recurring thoughts was imagining how much my death would have hurt them: they need a good father, and I’m trying my best to be one with some success. Thank you for making it possible for me to continue taking care of them.

The transplant was difficult. I spent four months in hospital, including eighteen days in Intensive Care: I nearly died three times. I came out fifty-five pounds lighter (no fat, little muscle). Recovery took more than seven months. During my hospital stay, my wife was with me, night and day. She took care of me as much as any of the nurses, even sleeping in the second bed in my room. We are very close, and neither of us had ever before had such happiness in a relationship. We are in love: thank you for letting us continue enjoying each other. I hope some day that you and I will get to know each other, and that you might meet my wonderful family.

I used to be of one blood type, but now that your blood flows through me, I have your blood. Since you moved in, my nails have gotten thicker, my hair, which had started to gray, reverted to my childhood light-brown with reddish highlights. You’ve renovated your new home, and I like the improvements. You’re a great roommate!

With inexpressible gratitude, I sign myself,

Your Living and Loving Recipient

A Matter of Perspective, and a Potpourri

TOPIC 1: PERSPECTIVE

Click above for a bigger view

So, thirteen months after my allogeneic transplant, how am I doing? It all depends upon how you look at it. I update this chart whenever I get new labs: looking at the data in this way emphasizes historical trends; reveals the "big picture"; at times, it even offers a glimpse of the future. (Unfortunately, learning to use Microsoft Excel to produce these charts can be maddeningly difficult. It's worth the trouble, though, if only to garner the admiration of the many who have tried and failed.) The red line is the most important for me to watch because I have light chain disease of type "kappa": in my case, it's the only useful marker obtainable through ordinary lab tests. (The terms of light chain disease, kappa and lambda, sound offputtingly mathematical, but the first initials of the last names of their discoverers are—wait for it—"k" and "l".)

The chart begins one month after the transplant began and extends to last week. Normal, for kappa, is 1.94 mg/dL. My most recent measurement was 35.9: am I in trouble? 

The Long View

Same data, but beginning two years ago. I've marked the day Ivonne and I married and the day my transplant began. For the record, the high point on the chart is 2140 mg/dL, a positively frightening number—it's amazing to me that I could have tolerated such a high tumor burden for as long as I did, and, because I had virtually no immune system, that I didn't die from an opportunistic infection. This longer-view chart is far more reassuring than the first one. From its perspective one can easily conclude that the variations seen in the first chart are, as engineers say, "in the noise": my condition has not significantly changed since the transplant. I am "stable." At the moment, I have nothing to worry about. Should this situation change—and it might never change—I still have options (lenalidomide, which helps the immune system fight the cancer without being damaged by it; donor lymphocyte infusions, which rev up the immune system's ability to attack).

This week, then, I sent out my first job-hunting feelers: one of my four teenagers needs braces; all four need to be sent to college; they eat their way through more than thirty eggs a week and countless gallons of milk; and don't even talk to me about iPads! They may have come from one of the poorest cities in Mexico (Tijuana), but, boy, did they ever pick up the technology in a hurry—dammit, niños, read a real book!

What's going through my mind? After a long session of pulling the African Queen through dense reeds, Bogart discovers that he’s covered with leeches, which he hates. Frantically, he and Hepburn use salt to remove them. Then comes one of the poignant moments in cinema: he realizes that despite his disgust he must go back into the water if they are to survive. Tellingly, Hepburn looks at him with a heavy heart but does not protest: she's no fool.

TOPIC 2: HAT TIP

Hat tip to Dr. Rahul Naik for deciding to go into myeloma research! He's working on a way to make Velcade (bortezomib) more effective.

TOPIC 3: FAMILY ADVENTURES

The whole family went to the Zoo last week. You might enjoy this picture of us. I really need to buy shirts that fit!

Nahomy, Jared, me, Ivonne, Sharon, and Ruben

Sharon and Ruben are spending a few days with their friends in Mexico. Jared decided to stay home, telling her mother, "I'll stay home because my role in the family is to make Lonnie's life miserable." She teases me constantly: she really is adorable.

TOPIC 4: THE BIRDS (THINK HITCHCOCK)

The bird feeder was up only one week before the scrub jays found it! They may be bullies, but they are fun to watch. Also, the first raptors have appeared: a peregrine falcon was spotted by my children eating one of the birds I've been feeding. My cat routinely splats herself against the glass door by the feeder trying to catch one—in pig latin, she's otnay ootay ightbray. My feathered friends are going through twenty-five pounds of black oil sunflower seeds a week. They make me smile.

TOPIC 5: FOURTH OF JULY MUSING (BELATED)

The New Colossus

Not like the brazen giant of Greek fame,

With conquering limbs astride from land to land;

Here at our sea-washed, sunset gates shall stand

A mighty woman with a torch, whose flame

Is the imprisoned lightning, and her name

Mother of Exiles. From her beacon-hand

Glows world-wide welcome; her mild eyes command

The air-bridged harbor that twin cities frame.

"Keep ancient lands, your storied pomp!" cries she

With silent lips. "Give me your tired, your poor,

Your huddled masses yearning to breathe free,

The wretched refuse of your teeming shore.

Send these, the homeless, tempest-tost to me,

I lift my lamp beside the golden door!"

— Emma Lazarus

These words, our sacred, national words, have graced the Statue of Liberty since October 28, 1886. This Fourth of July I couldn't help but admire those who so long ago held this vision of America. Many cite these words to make the case for American exceptionalism. Some say the idea that we are a welcoming, big-hearted people has always been a myth, but I don't believe that despite recent events. We have always been the most diverse of nations, and this diversity has blessed us with unparalleled strength and resilience. In time the new immigrants will be absorbed, as earlier waves of immigrants have been absorbed, and we will be even stronger because of it.

TOPIC 6: MUSCLES!
Or, rather, the lack thereof. As I've mentioned before, I lost 55lbs of muscle and fat during the allo. When I finally came home I had little of either. That's not an exaggeration. There wasn't much I could do for myself: I couldn't put on my clothes, take a shower without risking my life, go to the bathroom, or move from my bed to a chair. I couldn't put on my shoes. I couldn't roll over on my stomach. After the allo I had nothing—except my life.

Don't I Wish....

Now I'm hitting the gym three times a week, and, after the first time, going by myself. I'm doing what an experienced lifter does, but with almost no weight. Yet I'm getting stronger and feeling better (I prefer weight lifting to psychotherapy: unless you're terribly neurotic it works faster). My greatest disability is the lack of strength in my legs; however, I can notice an improvement already. I very much hope I don't hurt myself. I avoid any exercise that compresses my spine, but if I use my damned head I can work most of the other exercise machines. I can't warm up with the rowing machine, though: I'm afraid if I get down that low I won't be able to get back up without help.

TOPIC 7: BIG HAT TIP
I am alive today because of the determined efforts of Dr. James Mason of Scripps Clinic. The allo was his idea. There were numerous complications in addition to the medical ones, many of them administrative, many involving insurance, all of which he handled adroitly. Recently he became Chief of Staff. He well deserves it. Many of my other doctors have been absolutely first-rate—Dr. Joel Bernstein has taken excellent care of me for thirteen years—but, in the end, I continue to breathe because of Mason.

I've been the undeserved beneficiary of many miracles, most of which I've chronicled here; but the biggest factor in my survival might very well be the chance consultation with Dr. Mason years ago. He taught me about my disease and its treatment: he did not have to do this, but for years he made time to answer all of my questions —and, as I am sure he would attest, I usually had a boatload of questions. He is the only person who has ever made me regret not considering a career in medicine.

I am proud to call Jim my friend as well.

Birds!

The Western Scrub Jay

This weekend, after a five-year hiatus, I restored one of my backyard bird feeders. San Diego can't support an abundance of birds naturally: it's near-desertic (in rain, not in temperature), so food is scarce. Because I am insanely in love with all birds, as you know, for years I fed them with three giant seed feeders, suet, and red syrup for the hummers. Because I fed them what they truly like, black oil sunflower seeds, they didn't just stop by for a visit, they moved in. The population built up, starting with sparrows and finches, then with larger birds like the fun-to-watch bullies of the back yard, scrub jays. Over time, a full avian ecology was going in my back yard. Generations of jays and others would nest around my house. Eventually, the raptors arrived. It was not at all unusual to spot peregrine falcons eying my back yard as if it were a restaurant while red-tailed hawks swooped in for lunch. Every January or February, mallards still swim in my little pond for a few weeks, their hind ends and feet pointing high in the air with the rest of them nibbling under water. I've seen no ducklings yet, but I keep hoping. Once in a while, a fleet of crows sweeps in like fighter jets, screaming and fighting and chasing all the other birds away. I loved it.

A Norway Rat

But then there was the autologous transplant in 2005, which for a while left me too weak to feed them myself. Also, what birds like to eat, so do the rats (all part of the ecology, alas). Although I had rat preventers on the lower-floor feeders, birds are so messy that much of their food ends up on the ground. Hence the rats. It became so bad that if, about an hour before sunset, I shook the large ficus benjamina by my back door, a half-dozen rats would jump onto the ground and scurry away. In time, they found a way to nest in my attic, which, although large, is a chore for me to get into. Countless times I had to carry a big ladder up the stairs, dislodge the ceiling door, and set the traps with a combination of bacon and peanut butter (after removing the dead rats, of course). Ewww!

So I stopped the feedings, and, in a couple of years, my back yard reverted to its original state (i.e., few birds, all small, no rats).

This weekend, though, I couldn't stand it any longer: I needed birds! The sliding doors of my upstairs bedroom open onto a small deck which is seldom used (well, it is fun to put a telescope up there and watch the neighbors hurriedly close their blinds). Today, the first full day of good weather, the birds found the feeder. At the moment there are twelve of them split evenly between the feeder itself and the deck beneath it. Just sparrows and finches so far, but the crowd is building. I'll let you know when the first jay arrives, and when the first hawk decides to eat him.

Rosebud

Hatched May 1985, died November 3, 2008

Rosebud was my constant companion for twenty-three years. Where I was, he was. Rosie, in this picture, is on a cast-iron perch at the foot of my bed. The perch had to be made of cast iron because Rosebud was so heavy — there were nearly five pounds of him. He flew more or less like a bowling ball, although, when he flapped as hard as he could, there was a small gale in the house. He was more than a yard in length. One of his tail feathers, which I've kept, is more than two feet long. His talons were so large they wrapped around my wrists.

Rosebud was a Ruby macaw, a rare cross between a Scarlet and a Greenwing. They don't cross in the wild although there are places where they flock together. There are only a handful in the world.

He inherited the best features of both breeds. His cheeks were feathered, like a Greenwing. He had the bright yellow of a Scarlet. His red was greenwing deep, not like the washed-out tomato red of a Scarlet. Despite his great size, he was of gentle disposition, unlike the usual Scarlet, although he had strong likes and dislikes when it came to people. If you were one of the few people on his hate list, it was wise to keep your head away from him — one of my housekeepers had to have stitches in her ears twice. Very few creatures were on his bad side, but if they were, it was permanent.

He was subject to deep passions. In particular, he fell insanely and instantly in love with every black woman he ever saw. He was particularly enamored of one of my former housekeepers, also named Rose. When she would walk into the room he would practically fall off his perch, then would do whatever he could to attract her attention — scream, violently ring a bell that hung from his ring stand, flap his wings, say "hello" at the top of his voice (which, by the way, could be heard for miles if he decided to go all in). After getting on her arm, he would happily stay there for the rest of the day were she to allow it. He was completely heterosexual. He loved me, but I was Daddy, and that's different.

Rosie and Rosie

Other parrots mimic the voices they hear, by the way, but macaws are different — they have their own voices. Rosebud's voice was deep, as you might expect from one so large. He wasn't a great talker, but when he did talk he was amusing. I liked to occasionally blow his mind by taking him somewhere, like a hardware store. If he saw something that frightened him, he would babble softly like a baby in a stream of indecipherable words.

Rosebud was a hand-fed baby. Incubated, when he was hatched he was raised by humans as a human, fed with such foods as Gerber's baby food with a special spoon and plastic eyedroppers. (He loved cereal all his life.) I still have the spoon. Just like a human baby, he had to be fed every few hours around the clock. When I got him he was weaned to solid foods but still needed to be spoon fed for a few weeks. That's how I became Daddy. Such birds make wonderful pets because they have no fear of humans. In fact, in their birdly minds, they are humans. I'm sure he thought my plumage was ugly.

I had no intention of buying a bird at the bird store — I was buying food for another bird (a pain-in-the-ass wild macaw that I tamed who was named Merlin). When I first saw Rosebud he was covered in pin feathers, like a miniature porcupine, with practically no tail. The owner was handling him. After the Devil whispered in my ear, I asked the owner, may I hold him? In a trice Rosebud was on my forearm. I thought to myself, wow, he is everything I've ever wanted in a macaw. (I've adored macaws above all other birds — and I love every bird on this planet — ever since I was a little boy and saw my first macaw at Parrot Jungle in Miami.) So what did he do? He tightened up his claws on my sweater, leaned against my chest, and fell asleep. Adorable. I tried to get out of that store without buying him but I couldn't do it, nor he wouldn't let go of me. He was so cute! In a way, he bought me as much as I bought him. So about $2,500 later, not counting a monster cage, perches and stands, and horse-like quantities of food, I had the bird of my dreams.

I loved to take him places, in part because his mind needed periodic blowing and in part because the reactions of other people to seeing him were always delightful. Adults often would try to pretend that there was nothing strange about seeing a man with a gigantic, gaudy bird on his shoulder in a store, but kids had no such reservations. They would run up to me and immediately start peppering me with questions. What is that on your shoulder? Does he have a name? Does he talk? Can I touch him? Does he bite? To that last question, I would always respond with an enthusiastic, "Yes! He especially likes to bite off the fingers of little children!" Not that he would, of course. If upset enough, though, he could bite through a broomstick. His head and jaws were massive.

One day, my friend Kent and I took him to a dump that served a tolerably good beef sandwich. At the register, the buxom cashier saw Rosebud, then said, "You can't bring him in here!" I replied, matter-of-factly, "He's a seeing-eye bird." No further questions. Rosie sat with us on a chair back and ate bits of sandwich and fries. Rosebud especially liked Kentucky Fried Chicken. He'd sit on a chair back gnawing on a chicken leg grasped tightly in his talons, completely ignoring everything else. That was his way of protecting himself in an unfamiliar environment — acting for all the world as if it didn't exist and he was at home, on his perch. By the way, he was expert at cracking large bones open and scooping out the marrow.

But he was more than amusing, in a sense. Do you remember the old movie, Harvey? In it, Jimmie Stewart had an invisible giant rabbit friend, a pooka, that went with him everywhere. In one scene, in a bar, he explained how people in bars react to Harvey. What he said was equally true about Rosebud:

"They [the men in bars] tell about the big terrible things they've done and the big wonderful things they'll do. Their hopes, and their regrets, and their loves, and their hates. All very large, because nobody ever brings anything small into a bar. And then I introduce them to Harvey...and he's bigger and grander than anything they offer me. And when they leave, they leave impressed. The same people seldom come back; but that's envy, my dear. There's a little bit of envy in the best of us."

— Elwood P. Dowd (Jimmie Stewart), Harvey

So it was with Rosebud. Seeing him caused most folks come out of themselves for a few moments to appreciate him with a degree of wonder and awe. I don't claim that seeing him was life changing for everyone, but it certainly was for me.

One thing I liked about owning these magnificent birds was that they were likely to outlive me, having a possible lifespan of seventy or more years, although I felt guilty about feeling this way. While I wouldn't have to suffer the bereavement of losing Rosebud — he was, after all, like a son to me — he would be devastated by my death. To give you an example, one lady I know had to give up her bird due to unfortunate circumstances. She gave it to a new, loving home. One day, after visiting her bird at its new home, she had to leave. When she was in the driveway half-way to her car, the bird, who had never before said anything like this, yelled after her in a desperate tone: "I'm sorry!" These intelligent, passionate birds will break your heart.

A Scarlet, Sahara, playing peekaboo

And so it was with Rosebud. There was something a little odd that Monday morning. He wasn't paying much attention to his deep love, my housekeeper Rosie. He looked fine. After an hour or so I picked him up, wondering how he was. That's when I heard a gurgling sound during his breathing. It took me too long to panic, but, then, panic I did. I was racing with him out the door to the vet when he bit the holy hell out of my hand, fell to the front porch, and died in less than a minute, died in the most horrible way I could have possibly imagined, drowning in his own blood. All the way to the vet I tried to resuscitate him, but I knew there was no hope. A blood vessel had ruptured and had slowly leaked into his lungs.

I believe that there was nothing that could have been done for him even if I had caught on to his distress earlier (birds, when ill, hide it as a protective mechanism — they don't want others to see their vulnerability). Even had this happened in the arms of my dear bird vet, Jeff, there was nothing that could have been done. I passionately believe that. And I'll tell you why. Because the alternative is unthinkable.

I made a casket for him some forty inches long out of six-inch heavy plastic pipe capped at both ends in order to be both air and water tight. Inside I put the bell he rang so often when he wanted attention, some of his other toys, a brief note from me, and a walnut. Every night of his life, at bed time, I gave him a walnut. One time I nearly ran out of them in winter and had to air-freight them from South America. After devouring it, he would climb to the top-most perch of his gigantic cage and go to sleep. There had to be a walnut in his casket.

I wrapped him in linen. He required a lot of linen. Rosie, my housekeeper and big-hearted friend, helped prepare him. In what might be considered heresy by some, I put on my full religious clothing — tallit and yarmulke, and said Kaddish over him.

Still, I could not bear to put him in the ground. I kept him on the floor of my dining room for about a year. He was still home, you see. His cages and perches were right where he had left them, as if, in my lunacy and grief, he might be coming back.

On top of that, his death was so horrible to see, he suffered so much, that I had a full-blown attack of post-traumatic stress disorder (PTSD) that lasted for about five months. PTSD is nothing like grief. PTSD is a high-definition DVD playing — I can't even say "in my mind" because it is more than that. It is a complete reliving of the event, like the most realistic dream possible to have, over and over and over. There was no controlling it. It tore me apart.

After a few months, I realized that to stop the recording, I had to describe what happened to someone else. Completely. Especially, I had to describe the last ten seconds of it. I tried and tried but couldn't do it. I would occasionally get farther in my attempts, but always stopped short of those last seconds. When I finally was able to get to the end, the PTSD was over.

Rosebud is buried beside the big tree on the left

Last year my friend Kent, who is a genuinely good man, helped me bury him on the hillside behind my house. I couldn't do much to help, actually. Mostly, I just sat there. Kent, in his wisdom and kindness, forced me to talk about Rosebud although I didn't want to do it, and talking about him helped me. Rosebud was finally put to rest. Because it was the rainy season, I asked Kent to put some large rocks just below Rosebud's grave so the rains wouldn't uncover him. Now they can be removed. By local law, nothing can be done with the area where he's buried. I know he'll be undisturbed. That comforts me. I wish someone would buy the old cages and perches, but I've had no luck. Now that my house is filled with teenager, we need the room. Perhaps I'll have to donate them to a charity.

No, I don't think I'll be buying another bird. Rosebud was an act no other bird could possibly follow. I would be constantly comparing any new bird to Rosebud. No new bird could possibly measure up. Besides, in the last two years, I've lost two other pets I deeply loved, one of which, Yeti, I told you about. I can't stand the thought of losing another. I have to confess that when my own brother died last year, my grief was nowhere near as profound as it was after Rosebud died.

Besides, Rosebud, deep in my psyche, took the place of the son who abandoned me years ago. The great love I had for my son went to Rosebud who stood in for him. I don't want to do that again. It's crazy. Sanity requires that loss be accepted. Now, with this post about the death of Rosebud, perhaps I can finally accept the loss of my son, too.

My thinking about keeping these wonderful creatures has changed. I don't think keeping them is such a good idea. Although I declined to have Rosebud necropsied, I know that his diet was full of fat and other human garbage food, and, most importantly, there was no way he could have gotten the strenuous exercise his system was built for: after all, a macaw in the wild would be flying most of the day. Without their natural diet and exercise, they suffer from the same kind of sedentary diseases we do — high blood pressure, diabetes, you name it. There's no way to keep them inside and at the same time keep them healthy. Even if you build a huge flight cage in the back yard, so they can fly as much as they need to, they tend to revert to wild behavior. Either way, you lose them.

There is a flock of wild macaws over Point Loma, right here in San Diego. You can hear them coming for miles, screaming as they fly. Speaking fluent macaw, as I do, I called out to them as Rosebud might have done as they flew high overhead. Damned if they didn't change course, circle, and land on a tree just over my head in order to see the strange man who could speak macaw. The Navy, on whose property they live, has put gigantic garbage cans up in the trees for the macaws to use for nesting. I love the Navy for doing that. If you're ever in San Diego, do try to see them, especially in flight.

It was my very great privilege to have fostered Rosebud for twenty-three years. I want to thank you all for allowing me to share him with you.

Goodbye, Rosebud.

Greenwings in Bolivia