Saturday, June 26, 2010

The last time I was a Hero to my son, Lonnie, Jr., and my daughter Bess

Shakeys Pizza made pretty good pizza, the pitchers of beer were better, and best of all was the entertainment on weekends. I liked it especially when they had old-time itinerant banjo players, you know, the guys with the specially-made black wood footrests for the left foot. If you should be lucky enough these days to find one, be sure to ask him (or her) to play "My Dear, the World is Waiting for the Sunshine," the banjo standard by which they compete with each other. They might snarl at you a bit, but if they play it, you'll remember it. (I had one that lied to me, said he didn't know it: ten minutes later he gave me a rousing, wonderful performance.)

Lonnie and Bess came along on Friday nights sometimes, when they were little, and this evening's entertainment included a German beer-drinking contest from volunteers from the audience. I think there were at least five of us who volunteered.

Anyway, they give you a stein of lager and yell "go." The first one to put the stein upside-down on his head wins. Note that you don't actually have to drink the beer to win a German beer-drinking contest but everybody always does.

Now if we Nesselers are universally gifted, it is by the ability to gulp beer, so I volunteered. As we lined up, I noticed that the guy to my right was a huge trucker: my competition, I thought. We were each given a huge frothy stein of lager.

GO! And I was done, stein upside down on my head, while others were no more than half finished. Afterward, the trucker turned to me, and I'll never forget his look of astonishment, "How did you DO that?"

I forget the prize. Free pizza, probably. But the real prize was that my great son and brilliant daughter knew I was a champion (hahahaha), unlike anyone else's dad on earth.


That was then, this is now. Neither has tried to see me, not in more than twenty years, not even now, with my chances being what they are.


Thus far so good. I have passed just beyond the reach of tumor lysis syndrome, and no problems with the donor cells thus far. Engraftment has not yet been confirmed: I have zero neutrophils. I am flooded with medications. Four days of packed red blood cells in the last four days, every day potassium (usually six bags), and countless platelet transfusions. Explosive diarrhea: I have as much water and gas in me as the gulf.

I went in type A negative. By next week I should be O-pos. 

Ivonne stays with me most days and nights, and most nights I manage to maneuver the xmas tree of infusions through an obstacle course to reach her. She remains my biggest miracle.

Tuesday, June 22, 2010

Trial by Miracle

Last night I dreamed I was a guest at a kind of Orthodox Jewish event, which is odd for a Reform like me. We aren't usually invited anywhere.

The event was held in a collection of backyards of the of houses of the members of a huge family, also attended by close friends, neighbors, and me.

I remember a man in a kind of quickstep carrying the older of two brothers, who clearly wasn't right— he seemed to be unaware of being carried and resisting. When they passed, the younger brother said to me, "I wish I were as sick as my brother so that my dad might love me as much."

I awoke alarmed, knowing deeply in my heart that the boy was wrong.

I've been the recipient of events so unlikely and so numerous that I have been confused by the thought. Maybe it isn't enough for me to heal myself up, beat the cancer, and then resume my life. I will write the book about fear and cancer, but maybe that isn't enough. The guy who doesn't believe in miracles does believe he's developing weak knees. The question that nailed me this weekend is, is there anything I can do, should do, must do with the rest of my life to merit such gifts? Is it even possible? Since then I've been having strange dreams that haunt me when awake.

It feels like a knock upside the head. No one is this lucky.

Friday, June 18, 2010

A Visit by an Angel

No, I haven't gone completely loopy. My laptop failed yesterday leaving me in utter despair. I live by the Ethernet!

Old friends loaned me a laptop until mine could be repaired. I can breathe again!

There are early signs of graft activity, and I feel a whole lot better than I did earlier this week, although I am thoroughly weak and keep forgetting to eat (that's possible on the cardboard diet they are feeding me).

Thursday, June 17, 2010

Day Zero Plus One (a.k.a Thursday)

Good news today, I think. I appear to have slid past the danger from tumor lysis syndrome and am clearly on second base. Well, maybe only on first wishing to be on second.

It's difficult enough just getting into the bathroom.

Not that any base is a pleasant place. At night I've been burning up with fevers, weak and maybe at times delirious, which baffle me by going away in the morning. Neupogen shots have begun. And a dose of methotrexate.

I seem to be needing less pain medication,  but am getting headaches, which is rare for me. I'm trying to get food into me, too, but it isn't easy. Today I subsisted on yogurt, sealed cookies, Gatorade (I recommend red) and iced coke.  I just had a rather productive meeting with a nutritionist, so maybe we can kick-start my appetite with smoothies and sealed cookies. Appetite was good prior to donor infusion. But I fear that until the nightly fevers stop, eating is going to be a challenge.

All I can do now is report what happens. The challenges of this type of transplant have nothing or little to do with multiple myeloma, about which I claim some modest knowledge. In truth, doctors, nurses, and, to a lesser extent, me, we are exploring Terra Incognito. I do know we are awaiting signs of engraftment. We need to see neutrophils produced in my marrow.

Today's post wasn't easy, but I did set out to produce a daily record of the experience for those who may wish to follow.

Wednesday, June 16, 2010

Day Zero

The donor cells arrived in the night. Did you know the donor gets nothing for his troubles but the satisfaction of possibly saving a life?

I can't think of a greater gift to give another than the completely unrewarded, and possibly unwarranted, altruistic gift of life, can you?

In a year we will be given the opportunity to get to know one another, or a least the opportunity to agree to communication.

Donors get nothing in direct reward for their magnificent gift. It's a gift of pure love.

Although if the graft kills me, I might think less of it, and different people will win the pool money.

I'm not sure of the time today when the donor cells will be infused. If you've spent enough time in hospital, you realize they don't know either. But it will be today. I'll leave a postscript.

There are 8.5 million donors in the America's standard data bank, all of whom have volunteered samples to be properly typed just for an event such as this. They are the unchallenged heroes of my universe. Those, and the doctors and nurses who decided my life was worth saving, an outcome I never imagine I deserve one bit.

PS: Donation cells given, no adverse reactions yet, I'm exhausted.

Tuesday, June 15, 2010

Day Zero Minus One

About an hour ago I finished my last chemotherapy, thymoglobin (known around here as "the rabbit"). In about an hour a medium dose of Melphalan will kill off some of my marrow and stun the rest, so as to prepare it for the infusion of donor cells tomorrow. No more dex.

I will get a data point on the effectiveness of TMG (rabbit) and cladribine as a combined agents against kappa light-chain disease. There is some talk that they work, but at the moment it is difficult to imagine there being use outside of an in-patient basis.

Last night I had an unexpectedly painful reaction to the drugs. Broke right through morphine. Required every drug we had on the list to give me relief.

In an hour or so, the Melphalan will be administered. My choice will have been made, permanently. I have a pool going, if you'd care to contribute. Because I have Brit nurse, some quantity of Porter is involved. I think this picture of Moby Dick is not exactly the one I wanted. I wanted the one where the crew commits to hunting Moby Dick. Click on the picture of awesome detail.

Now I must suck on ice chips constantly. Because the hospital doesn't allow direct access to photos, like you'll find on Google Images no pictures. Which is too bad, because I want my epitaph to read, "We didn't think he needed it." Maybe later, when Verizon's 3G network may be usable, I'll add the picture I want.

$5, live or die, if you want in to the pool.

PS — The Melphalan was administered at 2:15.  The Moby Dick moment of commitment has passed. There is no going back. The dose was about half of the dose of an autologous transplant, who knows how much marrow that kills, and how much is left as "food" for the donor cells? Not I.

PPS — My epitaph: "They thought I wouldn't need it."

Saturday, June 12, 2010

It wasn't thymoglobulin Friday. It was cladribine.

You know you're doing serious chemotherapy, even more serious than the Arsenic Trioxide (otherwise known as the "last ditch" chemotheraphy, is when your nurse has to put on a hazmat suit to give it to you. But it is nothing like the Cladribine. It took two transfusions of packed red cells and other lengthy preparations to begin the infusion. I don't think it was much before 11pm before the final button was pushed. Melba, my nurse, and I high-fived. Then she went around putting up warning/chemo signs everywhere. My only problem with it was a headache. And not enough Atavan (oh, what a wonderful drug).

Today's adventure, which I think is with both a six-hour infusion of thymoglobin and a two hour infusion of Cladribine, plus more transfusions of packed red cells, will probably be more difficult. I think there are three more days of these two before the Melphalan whack on Tuesday.

A quick note to my Facebook Followers

Here in the hospital is a wonderful VISITOR wireless network that is becoming slowly useful. However, most social sites (Facebook, Youtube, etc.) are blocked. I get the emails, but, sadly, am unable to respond or post myself without some heroics (that is, using wireless broadband, an expensive and slow proposition.

Friday, June 11, 2010

I'm In!

This morning I checked into Scripps Green Hospital for the big event. Thus far I have a few bags of potassium, and two transfusions of whole blood. Surprisingly to me, they switched to the donor's type, O-, for the second transfusion (I'm A-). I didn't realize the donor had a different blood type and it didn't matter (but they are switching because?). Apparently he's what they call a "universal donor" (not that I know he's a he — I have no information about him except that two he began the premeds necessary for collection. What a remarkably great thing to do for someone else!

If you wish to send me mail, send to:

Lonnie J Nesseler
Rm B353
Scripps Green Hospital
10666 N. Torrey Pines Road
La Jolla CA 92037

If you have my regular home number, it's rings here. The hospital number is 858-554-2595

I'm happy, I look great, and have zero doubt or fear. Tuesday is when they whack me with the lower-dose melphalan, and Wednesday is when I get the donor cells. Wish me luck!

(By the way, the first conditioning chemo for me — thymoglobin — is made from rabbits!)

Tuesday, June 8, 2010

Three more days

On Friday, at 8am, I will be in the Scripps Green Hospital, transplant unit, and the conditioning chemotherapy will begin. I will be there no less than a month, and possibly up to five. I hope 1) not to be killed by tumor lysis syndrome (TLS), and 2) that the experience will be less difficult than the one in September 2005, when I had a full autologous transplant from my own stem cells (which were collected and frozen in 1998). If I make it to a week from Friday, I will probably be OK, at least until we learn the extent to which I will have residual graft vs. host disease (GVHD). It could take months to discover, or be obvious right away (not good).

The essential difference, by the way, between a reduced-intensity allogeneic transplant from a matched but unrelated donor (MUD, which stands for "matched unrelated donor"), and an autologous transplant, is between chemical destruction of the old bone marrow (with melphalan) and biological destruction of the old bone marrow (by the donor's stem cells). The autologous does not cure, but the MUD can. However, even if the cancer is gone forever, there will be some GVHD that is often permanent. It can be mild, and it can be anything but mild to the point of attacking connective tissue or even the organs and causing death. I  believe that by having a donor with a 9/10 HLA match at the genetic level, the worst isn't going to happen. never know.

It will also be good if the donor cells, which are being flown by courier here next Tuesday, are successful in attacking my cancer cells and my marrow. It is possible that I could end up with a bad result: both immune systems surviving in what is called a "dual chimera." The two won't be friendly to each other.

On the other hand, I found a new drug, recently approved for adults, that practically eliminates the risk of TLS, the only complication at all likely to kill me up front. A friend of mine, who had an autologous transplant, had TLS. His kidney functions stopped and there was risk of kidney death. He was on daily dialysis for many weeks, with other medications being pumped in to protect/restart the kidneys, but he was delirious, incoherent, and non-responsive for most of that time. I visited him often. I think he knew I was there but I could not understand him, and, later, he had only vague memories, but, amazingly enough, they pulled him through and the kidneys started to work. He was lucky. Sadly, though, he had waited too long for the autologous transplant and did not get a significant benefit from all of that suffering.

The new drug is called Elitek (rasburicase). Doctor and I agreed yesterday to add it to the protocol. The only potential problem for me is a severe allergic reaction to it, but, being allergic to nothing, I suspect I'll be ok. So the risk of immediate death drops from 20% to something much lower and I no longer am apprehensive about the next week or two. The Russian Roulette game is now being played with a couple of extra empty cylinders.

Today I must finish a revision to my will and add a codicil. It isn't what I needed (family trust, etc.) but it will be enough.

N.B. — My head is full of dex, so I might be incoherent myself today. Sorry.

Sunday, June 6, 2010

Unearthing the Music

I have not played piano in months, in part because the bone pain made it difficult to sit on a piano bench for longer that a few minutes, and in part because the brain damage affected my memory. Pieces I had memorized and played for decades just weren't there.

But yesterday I had just enough vicodin to be able to sit for a bit longer, so I decided to do what I had been avoiding — discover if my musical memory had returned after a four-month sojourn. I don't mind telling you I was frightened, music being such a huge part of my life, even after the cancer struck. Because I've lost so much muscle, I didn't expect to be able to play well: I just needed to know if the notes were still in my head.

Of course, I first tried to resurrect Chopin's Waltz in C-sharp minor. Why try to unearth something easy? If Chopin is still there, everything is still there. And, of course, I didn't go looking for the score on my bookshelf — it would have been a catastrophe had I needed it.

It wasn't easy. It was as if the melodies and fingerings were buried under feet of mud, but little by little, note by note, phrase by phrase, I remembered. Once I had recovered a long phrase, which at times was an irritating and lengthy process, I could accelerate without losing it! Yeah, it wasn't pretty because of the lack of strength and control in my hands and arms, but I heard the mechanical errors and fixed every damn one of them until I could play the piece just well enough that Chopin stopped by to tip his hat in encouragement. I STILL HAVE THE MUSIC!

I was at it for almost an hour, the longest physical challenge I've attempted this year. Near the end I was sweating profusely, eyes closed, listening to the notes and the phrasing, attempting not only to remember the pieces but to make them beautiful. Well, that last part I'll have to work on later.

I have never been happier. Like a mad thing, I brought back parts of the E minor waltz, then Paderewski, then Bach's Invention in F major. OMG, it was wonderful! If I could have done it, I would have sat there until I had dug up everything, including the gracefulness.

I don't think I'll need any more EKGs. Ivonne was helping me up the stairs afterward. Half-way to the top I started to sob and couldn't stop. Whatever else the last four months have taken from me, my heart was undamaged.

Wednesday, June 2, 2010

On the Schedule!

After five months of complications, misery and delay, I just learned that my transplant is ON THE SCHEDULE! I'll be admitted on the 11th of June for four days of cladribine & thymoglobin, then melphalan on the 15th, and, finally, the donor cells on the 16th. All I have to do now is to stay healthy for nine more days!