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.