I have no idea what it is!
Exactly three years, to the day, since transfusion with no less than 3 bags of bone marrow extracted earlier from an exceptionally giving person still unknown to me.
Today I reflect on what I've been through. I review my ABCs.
Four years ago I was in the hospital for congestive heart failure (CHF), a rare side-effect of treatment with interferon (IFN), a human hormone that can sometimes suppress chronic myelogenous leukemia (CML). For me, the hormone did not cure the cancer but did cause the heart to fail. I guess I'm just one of those rare cases.
Three years ago I was in the hospital for the bone marrow transplant (BMT), to restore my blood-forming tissues after they had been killed off along with the leukemia by the previous four months of various chemo- and radiotherapies. I had already been in the hospital for four months and was to remain there for one more month of infections and acute graft-versus-host disease (GvHD).
Two years ago I was not in the hospital (yay!), but I was being simultaneously treated for keratoconjuncitivitus sicca (KCS; dry eye skin hangs loose), non-insulin-dependent diabetes mellitus (NIDDM; can't control blood sugar), and superventricular tachycardias (SVTs; can't control high pulse rate). The last required frequent trips to the emergency room, but no overnight hospital stays. Most frighteningly, relapse of the cancer reared its ugly head but was beaten back.
One year ago I was not in the hospital, but I was about to be, for the first of two hip replacements. The hips had deteriorated due to avascular osteonecrosis (AVN). So had one shoulder.
Today, I am still somewhat immunosuppressed, and I still have one bum shoulder. I have occasionally sore hips, legs of slightly different lengths, bad skin (rashes, discolorations, moles, warts, etc), a cavity to be filled, a strange cough, less hair and more belly. In other words, compared to before I have nothing worthwhile to complain about. Life is better than I have any reason to expect, and I am thankful. Hopefully I will be able to thank my donor personally before the next anniversary.
Hey, enough about the past, it is time to think about the future.
Almost three years, to the day, since diagnosis with leukemic blast crisis. That meant only a few months to live. At the time, I had no matched bone marrow donor, and the likelihood of a transplant working on a blast crisis patient was virtually nil anyway.
But nevertheless, because of the help and expertise and, well, love of so many people, I can type this babble. I AM babbling. Y'know, despite continuing immunosuppression and some skin problems and a limp in the left leg and a necrotized shoulder, it's about time. Time to meet my donor, and thank her. Don't you agree?
Note: the titanium hips do NOT set off airport metal detectors. At least not every time.
May 1, 2000
Happy MayDay folks. We don't get much of this in The States and I wanted to show that we Americans are not entirely unaware of this global holiday. This also reminds me that it is time to pay the rent. ;)
April 15, 2000
Three operations later, I now sport two brand new hips. My doctor employed the finest titanium materials to created these hip fashion accessories. The recovery has so far been very rapid; I was out of the hospital after a record three nights. There is little pain, and I am already lowering the narcotics. I can't say that I feel like six million dollars, but I can't complain. And my legs are almost the same length.
Crutches will be the order of the day for a few more weeks. After that, a cane, and than eventually nothing at all. Being back on one's two feet (for the first time in almost a year) and maybe it's time to pursue a normal life??
I'm itching to travel. Maybe if my immunosuppressive drugs are low enough this summer, I will get to travel by airplane. Let's see if the hips set off any metal detectors.
March 7, 2000. Super Tuesday.
I really can't get this right. Turns out my right leg, the one with the artificial hip, is not longer than the left leg because of the operation, as I have suggested previously. No, the left leg is simply getting SHORTER and shorter, as the hip joint simply disintegrates. Yes, it is disintegrating. No fracture like last time; merely the ball of the ball-and-socket joint is no longer spherical. On an Xray, it looks like it's been scalped.
The left leg is almost two inches shorter. The left knee is almost two inches higher. Egad. My orthopedist wrote a prescription for appropriately elevated footwear. Instead Ako and I went to Payless and bought these ugly thick-soled sneakers (de rigeaur amongst America's youth last year, now out-of-fashion and therefore very cheap). $14. Of course, I'm only wearing the left shoe. Anyone want the right one?
Some guys wear unmatched socks. I wear unmatched shoes.
This bad fashion sense is not acceptable. I need to have my left hip replaced.
Come to think of it, my artificial right hip is working so well, I would replace my left hip even if it were healthy. Not really.
The surgery is scheduled for the end of March. Until then, I get to hobble to the voting booth. I wonder if they have special disabled access. No matter, the nearly-Bionic Man is off to the polls!
But first, another moment of silence. I recently learned that a couple of weeks ago yet another comrade in the bone marrow wars has succumbed. I salute him too.
January 19, 2000
Just Say No to Drugs, they say. Easier said than done. For the past year I have been slowly tapering off my immunosuppressive steroid prednisone. Slowly, but surely. Last week Dr. Rugo dropped my dosage again, and this time it was a big drop. My body is physiologically addicted to the stuff (natural steroid production has shut down) and so this is very hard. In addition, I am trying to cut back on the large amounts of narcotic that I have been taking to kill post-surgical pain, which means I am getting a small taste of Cold Turkey. This is all rather upsetting, especially for my stomach. But it should all get better after a while. As is always the case when you try to kick a habit.
A conversation with a friend about delirium reminded me of my post-BMT experiences two years ago. I've tried to write down what i remember. Read them if you want to see how weird the mind can be.
January 15, 2000
Time to check in. This shouldn't be too hard, since I am pretty immobile and sitting around all of the time. I coninue to pop pain-killing narcotics, I do physical therapy exercises, I complain about my increasingly painful left shoulder (quickly deteriorating due to yet more avascular osteonecrosis...will it never end? Yes, because I have only two hips and two shoulders!), I try to keep mentally alert by reading this and writing that. Now that my new titanium/chromium/cobalt hip is in place, and the winter is upon us, I can answer the oft-asked question as to whether it feels funny in cold weather. I say, no it doesn't. I have yet to see if I will set off metal detectors in airports. I hope so.
And in a curious twist, my right leg is now LONGER than my left one, apparently due to the operation. Compare and contrast to its former shortness. Can't I ever get this right? ;)
A New One
Amazing. We made it. Maybe not all in one piece, missing a hip here and there, but still we made it. I distinctly remember the sounds of hammers sculpting my new hip for the new year. And today I feel like it's a part of me. Rather astonishing, if you ask me.
The surgeon went in and out in one hour. I even managed to hobble home for Christmas Eve. And the New Year. Cool.
I hope you have a good one too! Remember to enjoy Life.
December 10, 1999. A few hours later.
Apologies for all the ranting and raving and whining a few hours ago (see previous entry). I don't know what got into me. A little reflection has reminded me about what is important and wonderful about this anniversary. Which is that 1) I am alive and 2) I am alive because of the heroic efforts and support of an amazing number of caring people, from Dr. Rugo and the staffs of UCSF and Fred Hutchinson Cancer Center, to my employer and colleagues at work and, yes, my HMO. From the Asian community and the patient community to the many organizations dedicated to finding donors and fighting cancer. And from my loving friends and family both near and far away, to the innumerable strangers who have lent a helping hand from every corner of the globe. The most important of those strangers is, of course, one very generous 23- (no, by now 25-) year old Japanese-American woman with some well-matched and very plucky bone marrow.
I have not met my donor, all I know about her is written above. But Ako and I sometimes talk about her as though she were right here beside us (which in a sense she is). When we do, for reasons not entirely clear we refer to her as 'Doris'. Therefore I, Alan Kuo, with the power invested in me by Doris herself, hereby mark this day as Doris Day. [listen for clinking glasses]
I hope Doris does not mind being so saluted. Some day I expect to meet her.
But first I have to get over my present difficulties. It's time to be 'post-hip'. And everyone reading this, please, eat drink and be merry. And dance. With a little luck, in a few months my hip replacement will perform as advertised and I will be able to join you on the dance floor. But not if it's the macarena.
December 10, 1999. Two years out.
And hopefully many more to go.
But it won't be easy. Just a couple of days ago I had Xrays done of my bum right hip, which seems to be recovering alot more slowly than my left hip, if at all. I also observed to Ako that it is shorter, but she didn't believe me. Now she does. The Xrays say so.
The ball of the right ball-and-socket joint is fractured, due to the avascular osteonecrosis. Evidently the previous minor surgery didn't help. Because of the fracture, my leg is displaced almost 1 inch relative to the pelvis. Thus my right leg really is shorter!!! It is also weak and painful. It sucks. The only way to fix it is to go for major surgery: a hip replacement. An artificial joint. And another hospitalization and a few more months incarcerated in my own home. Which sucks. The good part is getting that yummy hospital food again. And watching more bad TV. Just kidding.
These artificial joints are made of metal and plastic. They supposedly last forever, or at least a couple of decades. Then they wear out and you have to replace them. I guess it's like doing a trade-in, except you can't sell your used joint back to the dealer.
I'm going to go for the local anaesthesia, so that I can watch the chainsaws in action. Don't worry, if it gets too ugly, I'll just pass out. Again, just kidding.
You might be able to tell that I am not reacting to this all that well. I should and do remember that I am very lucky to be alive two years after transplant. No one said it would be easy. It's just that once again a holiday will be spent in a hospital. Which isn't all that bad, except I've had better eggnog.
Sheez Alan, get over it. Happy Holiday everyone. Drink lots of champagne. Smooch your loved ones, and hold them very very tight. Please.
December 6, 1999
Y'know, it's been no less than TWO years since I was 100% my own original equipment. Yup, in a few days we celebrate my sister's birthday. And that happens also to be the day that I got someone else's most excellent bone marrow. Little did I know back then that I would live, perhaps, to see the next decade, century, and millenium. Pretty cool. Lots of people to thank for that!
Recently Dr. Rugo once again stuck a heavy-gauge needle into my pelvic bone to extract its marrow for analysis. And once again nary a cancer cell was to be found, using the most sensitive detection techniques available at the Hutch. That means I have been a 'cancer-free zone' for some nine months. We are starting to become pretty confident that it won't come back. Too bad, this way it will be harder to get people's sympathy. :)
Not all is perfect, of course. In September I finally addressed the hip problem. The minor surgery, which relieves the osteonecrosis in each hip, went well, in the sense that the hip pain is largely gone. However since then I have been unable to walk properly. At first this was due to a fear of fracture; time was needed to allow the bones to heal. I spent most of my time in bed, occasionally making forays with crutches or wheelchair. But during this time my muscles atrophied to the point that I now still need to use a cane or walker. And I don't get to make up for walking by doing more talking. When you constantly pop pain-killing narcotics you don't think very well or very fast. There are quipsters, and there are hipsters, and I am neither. So I really know what it is like to be disabled.
There is a plus side to all this. No one expects you to work, everyone gets things and opens doors for you, you get to sit around at home and do nothing. The minus side is that it is very difficult to work, there is often no one there when you want to get something or open a door, and you end up sitting around at home and doing nothing.
For those of you who, like me until now, have never been disabled, mark my words. It is really REALLY tough being disabled. After I get well (and I don't know when that will be) I will never ever ever ever again even begin to think about stopping in a 'handicapped' parking spot.
August 20, 1999
July 24, 1999
Sorry friends, for being out of touch for so long! But to reassure you, I am happy to say that things are going pretty well. I've actually been quite busy, finally getting around to doing all those things I haven't been able to do for so long....like catch up on work! Although I am still banned from entering my lab due to continuing immunosuppression, I've been able to make some progress at least by meeting regularly with coworkers outside lab and doing work from home. It feels great to be getting back into the swing of things, although a little scary as I realize how fast time is passing and how much there is still to do.
On the medical front: although overall things are still going well, in the past few weeks I've had my first setback in a long time. Nothing as major as relapse, but a pain in the butt nonetheless. Actually, it's pain in the hips, caused by long term use of prednisone. Apparently, and no one seems to know why, long-term prednisone use causes loss of blood access to certain bone tissue which in turn can result in the bone tissue dying. The medical term for this is avascular osteonecrosis. This is what's happening to my hips, causing me to hobble around and pop ibuprofen like candy. Minor surgery will probably be in the cards. Bleah.
Psst. Don't tell anyone, but Ako and I are off to see StarWars a second time...
March 8, 1999
More test results came in today. This molecular test (same as the summer tests described in the October Update) is the most sensitive assay available. And this too is negative! So the treatment plan worked beyond expectation. Is my doctor awesome or what?
Ako and I celebrated by dining on robata yaki (Japanese grill). Liver of eel, spicy sardine, foot of clam, tail of lobster. Yummyum.
February 24, 1999
The test results (see 2/23/99) are in! And they are negative! No sign of leukemia cells! My dad offers a celebratory toast!
What a difference a day makes!
February 23, 1999
I haven't been here for quite a while. Apologies. Since Thanksgiving I've had one hospitalization for an infection (pneumonia caused by flu virus), multiple tachycardias (two of which put me in the ER), diabetes (yet another side-effect of prednisone), and continued problems with eyes, gut, muscles, etc.
It's been a very hard six months. One thing after another. It makes one think, why go through all this trouble? Why live if you can't LIVE? On the other hand, last week was my 4-year anniversary since initial diagnosis with CML, and December was my one-year anniversary for BMT. Given the odds, I am doing very well. Given my continuing inability to function as a real person, I am not.
On top of it all in December yet another less-sensitive leukemia test (cf. October Update) revealed multiplying leukemia cells for the first time since BMT. This is much more serious than the summer test results that I describe in the October Update. Once again we have fought back by removing immunosuppressive therapy, but this time more gradually. I am now off of cyclosporine completely, but still take a dose of prednisone to prevent GvHD. Hopefully GvL (see October Update) will kill off the leukemia. So far so good, as I have not had a GvHD flareup the way I did in August. The question is whether the drug changes worked. Last week, on my 4-year anniversary, I had another biopsy done for another test. We will see in a week whether we can claim some sort of victory or not.
Consolation prizes: With less prednisone, some of the fat has gone, and the diabetes is too. The eyes and muscles have recovered enough to allow me to drive for the first time since October. Without cyclosporine, hair has stopped growing all over the place. Less fat 'n less fuzz, what more could one ask for?
Except Ako and I had a large chicken rather than a turkey. In fact, last time I had a real T-giving (ie when I was not very sick or in the hospital, back in 1995) we had two Cornish game hens. And previous to that my family usually had a restaurant's Peking duck! Yummy! But this year's dinner was more conventional...chicken, sweet potato, green beans, cranberries, wild rice, apple and onion stuffing, apple pie. Absolutely no alcohol or caffeine, though. Can't always get what you want. This meal was entirely prepared by Ako, for I (conveniently?) suffered not one but two tachycardia events (see previous update) on that very day. Scary and frustrating. Perhaps it was good that I was prevented from cooking, as Ako's meal was delicious!
Other inconveniences that occurred last month...a couple more tachycardia events, two of which required visits to the ER, a massive cavity requiring a visit to a specialist dentist, bad knees, a possible but transient infection, dry and tasteless mouth, and eyes so bad that one has been sewn up to prevent stuff from flopping out (yechh!).
Since then, things have been slow and unexciting, deliberately so. Very little work or play accomplished, lots of resting and sleeping and eating. Bad eyes continue to make driving impossible and reading and writing difficult. But the result is very gradual real improvement, in my eyes, mouth, and knees. I just hope that everything is in good order when family descends upon me for Christmas!
I hope everyone had an even better Thanksgiving than I, and I wish all the best for the next round of holidays in December.
Tricks and Treats
Tricky stuff, this BMT stuff. Just in time for All Hallow's Day, I learn the hard way that GvHD can make your eyes hang out. Specifically, my new immune system has apparently taken a dislike of my tear glands, causing my eyes to dry out and the skin of the eyes to literally hang out of my sockets. It's pretty ugly, but then I've never been a model anyway. Might be the basis of a pretty scary costume, though. To help fix this, I get all sorts of weird eye-drops and even eye injections (containing prednisone, of course) and a neat eyepatch. The effect is less than ideal, because I can barely see and am not very functional (amazing I am typing this out, probably with lots of typos). On the other hand, Ako and I have proven that one can swing dance even if the leader is blind. In other news, GvHD is once again ulcerating my mouth and suppressing platelets so I get to bruise easily. Will the fun never end?
To stop all this whining, I continue the immunosuppressive drugs prednisone and cyclosporine. Besides fat and fuzz, these drugs apparently cause high blood pressure and predispose me to tachycardia (pounding racing heart) which I've had the good fortune of experiencing several times since Seattle. Imagine speeding along at 188 beats per minute. The treatments are even more breathtaking. And of course these drugs leave me vulnerable to germs...I was hospitalized briefly AGAIN, this time for a gut bacterial infection that spread unwelcomely into the bloodstream. I need a hospital drive-thru.
Treatment does have a positive effect though. It makes me very active, very alert, and very HUNGRY. I've gained all my weight back, I once more enjoy eating and cooking, and my cooking ain't bad, if I may brag a little. Even Ako puts up with it. And until my eyes winked out, I began serious work again, as well as fun stuff like concerts and movies and hikes and restaurants again. Above all, I read and read and read, a little poetry here, a little philosophy there, and of course plenty of science everywhere. And medicine too, unfortunately. I've finally figured out how prednisone and cyclosporine work. I don't yet understand the ins and outs of GvHD, and I still don't know how my new immune system is going to adapt to its new host (me) in the long run. I suppose that is my next reading project, once I get these eyes back...
Have a fun Halloween. Boo!
Two steps back
Well, as they say in (anti-)operatic circles, it ain't over 'till the fat lady sings. And despite our long wait for her much anticipated aria, she ain't quite sung yet.
"Independence Day" was Not. Two successive (admittedly hypersensitive) leukemia cell tests were positive, meaning I have some potential leukemia cells still lying around. Even after all that yummy hospital food. On the slightly plus side, all other less sensitive molecular, genetic, and morphological assays were absolutely negative, which means that I am technically NOT in relapse. Not yet. Relapse (return of the cancer) is not inevitable, but it is a real possibility, especially for a blast-crisis veteran like myself (that's because blast-crisis cells are unusually aggressive, not as nice as your average chronic leukemia cell). Naturally, this news was and is something of a bummer.
To forstall relapse, and to once again beat the odds, I did what may seem counterintuitive: deliberately provoke GvHD! Why? Because the very donor immune system that threatens me with GvHD can also attack the residual leukemia cells (a so-called "Graft-versus-Leukemia Effect", or GvL). To this end, my doc began depriving me of the anti-GvHD immunosuppressive drugs that I've been taking daily ever since transplant. Thus I suffered more GvHD, but less immunosuppression, and accordingly became less afraid of germs.
Thus came the zinger. I got a bacterial pneumonia, undoubtedly from my increased willingness to hang out with crowds and kids. Hospitalization, temporary catheterization, and antibiotics wiped the bacteria out very quickly. But by this time my GvHD ran out of control. It attacked my intestines, so I could not absorb drugs or food. Once again I found myself in UCSF hospital, shooting up with artificial nutrition, antibiotics, and those same immunosuppressive drugs to which I had just said "adios". After almost a month, the GvHD was once again suppressed and my intestines returned to normal, allowing me to eat again and leave hospital. And its Back to Square One with respect to GvHD, immunosuppression, and relapse.
Apologies for being a little downbeat in today's Update. I realize this is not my usual self. I notice no jokes. I have been blabbering about only myself and not about all the sufferings and kindnesses of Ako and family and friends and the UCSF staff, not to mention our cats running out of food. The fact that another BMT comrade died just before I was hospitalized does not help. I salute her.
Now that the episode is over, and I am back on my feet (but fat 'n fuzzy again), friends tell me that things could be worse. They're right. Nevertheless, I wish things were better. I do enjoy good opera (Verdi's La Traviata is still my fav), but I can't wait for the fat lady to sing. Unfortunately, now they are reprising Act One a second time.
July 8 Independence Day
Hair is in. And catheter is out. Yes, the plastic tube implanted into my chest near my heart since Thanksgiving 1997, which has been my primary connection with the medical world, the portal through which blood was removed for daily analysis and into which many things - drugs, chemotherapies, fluids, nutrients, antibiotics, other people's blood and platelets, and of course a certain someone's bone marrow - were infused for six months. Yes, my friendly neighborhood catheter, my constant companion, loyal friend, intimate associate, artificial appendage, the subject of countless conversations in hospital and at home and even a few parties. Yes, after long and gallant service my catheter was removed last week on a surgical table not very different from the one on which it was implanted. The end of an era. Perhaps a declaration of independence. Certainly, to Dr. Rugo and to myself, a symbol of confidence in the future.
It's about time for a little confidence, and for a little future. It's been almost exactly one year (July 7, 1997) since I was first diagnosed with Blast Crisis. In the next 12 months I, no we, have fought, cried, brooded, philosophized, struggled, and even, surprisingly often, laughed. And, remarkably, survived. Not merely survive, but feel well enough to take a hike, enjoy a meal, read a book, and hug a loved one, just as I had hoped for when I first asked for help a year ago on this Website. I could not ask for more. Nor should I, says my doc.
The Word on tests for assessing likelihood of relapse of the cancer is not yet in. I try not to think about it.
By the way, some of you have asked whether I have a new blood type now. Indeed I do. Furthermore, all of my bone marrow cells and therefore all of my blood cells are now 'XX' rather than the former 'Xy'. In short, my blood and immune system are female rather than male. No one, however, has observed that my famously poor sense of interior decoration has improved at all.
May 8, 1998
fat 'n fuzzy
Yup, that's me, fat 'n fuzzy. Fat is due to one immunosuppressive anti-GvHD drug called prednisone, fuzz is due to a second immunosuppressive anti-GvHD drug called cyclosporine [Med school redux: GvHD = Graft-versus-Host Disease, which is the donor's graft, ie my new marrow, attacking the host, ie moi]. The fat is mostly in my cheeks, belly, and feet, thus giving me the appearance of having a beer belly, even though I do not drink beer. Also, I am now blessed with the classical moon face, the defining feature of traditional Chinese (female) beauty. As for fuzz, it is no longer limited to the earlobes, but is everywhere, especially the cheeks, where it threatens to become sideburns. On the plus side, all of the bald spots on my scalp are now gone. Cyclosporine as an alternative to Rogaine?
Because I have a major tissue antigen mismatch with my new marrow's donor (precisely, the mismatch is at the B locus), it is inevitable that the marrow and me do not get along very well and that GvHD is a significant and potentially life-threatening problem. So the fat 'n fuzzy side-effects of the prednisone and cyclosporine are worth the annoyance. Unfortunately, another side-effect of the two drugs is much worse than annoying; the drugs are intrinsically immunosuppressive. So I still have to be very careful to avoid evil bugs (viruses, bacteria, and fungi). This means avoiding dirt, crowds, and contaminated food, making it hard to work, to play, and for that matter to vacuum the carpets. Seriously, I have been quite lucky so far, for infections by the above-described bugs have plagued and even killed many a fellow BMT patient. Excuse me for a moment, I need to take a second to reflect on some less-fortunate comrades.
Now, where was I? In summary, I am doing remarkably well for a patient with a transplant from an unrelated donor with a major mismatch. I am back with Dr. Rugo at UCSF, my family has left town and returned to the normalcy they deserve, dear Ako is taking care of me, and I need less care as I slowly recover and become more capable of doing more things myself. I'm reading lots, including work-related scientific papers and reviews as well as some poetry here and some history there. We have the GvHD under control and kept the infections at bay, leaving only relapse of my cancer to worry about in the short-term (we are looking for evidence of relapse now). In the long-term, the various chemo- and radiation therapies I have received in the past year will certainly raise my risk for developing other cancers, but that is a worry of the distant future. So thanks to all of you, to UCSF and The Hutch, to my family and friends, to Ako, and to a certain donor, I should rename this Update fat 'n fuzzy 'n still kicking!
March 8, 1998
The verdict is in. Certain kinds of therapy (such as the chemo and radiation treatments I received just before BMT in order to totally wipe out all bone marrow, both cancerous and healthy) DO cause loss of nose hairs. Eyelashes too. As if to make up for this profound loss, one of the anti-GVHD drugs that I am taking post-BMT encourages hair growth, but in the wrong places. A baby-grey fuzz is proliferating on my...egad...earlobes. Chia-pet. And no one knows why.
Despite my difficult time Christmastime, my subsequent recovery was rapid in the eyes of the Hutch docs, and so I was evicted from the hospital in late January. Since then I have lived with my parents a few blocks from the Hutch, as an outpatient. The outpatient clinic monitors me closely, looking out for GVHD and infections, watching nutrition and fluid intake and organ functions and engraftment, and administering blood transfusions and antibiotics and nutrient supplements when necessary. We (my parents and Ako and myself) are also responsible for many infusions and a gadzillion pills, so being an outpatient was at first much harder than being a hospital patient. To top it all off, the anti-GVHD drugs are by nature immunosuppressive, which means that I still am at high risk for infections. As a result, I take some antibiotics, and I must maintain a lifestyle that avoids excessive exposure to germs. This means avoiding unwashed hands, crowded theaters, little kids, green houses, dirty animals, garbage cans, and above all, foods not carefully selected and prepared for germ-freeness. This really cramps that swinging San Francisco restaurant scene. But it also means lots of good 'ol Mom home-cookin' (the best rice noodles and fried rice on the planet). Unfortunately, this situation is expected to last 6-12 months (assuming no complications), and I do not expect Mom to hang around for so long!
The good thing is that as an outpatient, I have had few really serious incidents: one inconsequential infection at the very beginning, a more serious dehydration incident shortly thereafter, a very painful viral outbreak last week, and a bizarre facial rash upon suppression of the virus. The last has just disappeared, without explanation. Fun, no? Actually, I feel quite good about this. For the first time I can fairly say that I have a greater than 50% chance of long-term survival. Now if this earlobe fuzz would also just disappear...
January 8, 1998 (Whoo-wee!)
A new year, a new bone marrow. No kidding. On December 10 bone marrow from our very giving, generous donor appeared by my bedside and flooded into my body like any old blood transfusion, except this was bone marrow. Lots of it too (3 packets). Thanks donor, wherever you are!
At first, things were fine, most problems being predictable ones resulting from the chemo and radiation that is supposed to kill off your bad bone marrow and prepare the way for the good new stuff. But just before Christmas I took another look at the abyss, or I would have except that I was completely out of it. My liver and kidney functions went life-threateningly askew, and I acquired several undefined fevers as well as some difficult-to-treat bugs. This was a difficult and heroic time for Ako and Zenda and my parents. I wish I did not create such suffering. Meanwhile, I have little recollection of events except my own random delirious ones. I was in fact delirious (insane?) for over a week, including Christmas.
Since then, things have moved in the best possible way. Liver and kidney functions are approaching acceptable. Fevers and other evidences of infections appear to have disappeared. So far the appearance of graft-versus-host-disease (GvHD) has been mild. The Best News: the donor bone marrow's stem cells successfully navigated their way into my bones and set up shop to make new blood cells, I learned at the end of last week. In other words, the BMT engraftment clearly worked. This is what it's all about, no? This is the continuation of Life. Curiously, I am now a chimaera, a mosaic, a mixture of two people, a partner!
In a sense, engraftment is the most amazing obstacle we overcame. And upon doing so, I cry for joy and thanks, and for the sheer and quiet whisper of life. What a way to start the New Year. What a way to start ANY year! Or any moment!
I've also discovered that there is no simple hattrick. I will still be coming home to do battle, with possible infections, with GvHD, and worst of all with the possibility of relapse.
December 8, 1997
And the guinea pig has landed! My ingenious Dr. Rugo (for pic, click here) decided to hit me with an additional chemo drug and voila, against all medical expectation, including hers, I am now in second chronic phase! This means almost no blasts in my bone marrow. No more blast crisis! Once a very very difficult case, this pig is now eminently transplantable. We've beaten heavy odds, and frankly I am amazed. And thankful. And ecstatic!
As you all know, defeating the blast crisis was only one mountain to climb. The other was getting a good donor. And as all you who conducted registration drives, and who pushed the publicity, and who registered to be donors, already know, we found such a donor. This giving person is a 5/6 antigen match with me, including matching with the all-important DR0406 antigen. The experts say that this never happens when patients launch grassroots drives. Well, we, all of us, proved them wrong. Again, we've beaten heavy odds. And again, I am amazed and thankful and ecstatic!
So that's two mountains, now there's the third and final one to surmount. We have a donor, we have a transplantable recipient, all we need is the actual transplant. And so here I am residing in the posh Fred Hutchinson Cancer Center ("The Hutch", as they say), listening to blues with my Ako. The Hutch is the oldest and most experienced bone marrow transplant center on the planet. I am presently deep into their treatment plan, involving chemo and radiation to wipe out my bone marrow (including cancer cells) as much as possible. In the next few days I will receive the donated bone marrow to replace it. Then the new marrow must engraft, infections have to be prevented or fought off, and graft-versus-host disease (a kind of tissue rejection) must be controlled. And when all that happens, we will have beaten the last set of odds, surmounted the last hill, done what they call in hockey a 'hat-trick'. And again I will be amazed, thankful, and ecstatic. And alive!
November 8, 1997
Wow, been in the hospital for a whole month! And many weeks to go. Luckily, this has not been the horrible misery that was the August hospital stay, thanks to the low toxicities of the current chemotherapies (including a brand-new, cutting-edge experimental drug never before used at UCSF. Call me guinea pig!) These drugs will hopefully kill the blasts and push me back into a chronic phase leukemia, thus allowing transplantation a reasonable chance of success. And so far, it looks promising. But the final word is not in yet. At this point, my blood cells are probably at their nadir, and it may take a long time for normal blood cell production to resume. In the meantime, I stay in the hospital, where I've been able to keep quite busy lifting weights (I moved from 5 lbs. to 8 lbs.), reading books (from Chinese philosophy to democratic theory), watching videos (from Zefferelli's Romeo and Juliet to Terminator 2), and drawing Halloween pictures. And dancing with Ako to my new CD player.... :)
Sorry for not spilling the latest poop for so long! Fortunately, I have GOOD news to tell. The transplantation people tell me that there is a potential bone marrow donor who is a 5-out-of-6 antigen match with me, which is not a perfect match but is pretty darn good [for those of you who don't know what I'm talking about, check out the second Frequently Asked Question]! This donor was discovered very recently. So it seems to me that this good-hearted person is likely to have registered in the last couple of months, perhaps in one of the numerous drives that so many incredible people have made possible since July.
However, first I have to kill off as many of my blasts as possible (as I've mentioned in previous updates), which means a second round of heavy-duty chemotherapy. I've been slated for a second round several times in the past two weeks, only to have it postponed. The reasons for delay have largely been good, mainly that my blasts are so far well-behaved, and are not about to do me in yet. But tomorrow's appointment is for real. Serious chemo starts again on Thursday, for I-don't-know-how-long. This chemo needs to work. Keep your fingers crossed, please!
By the way, my hair is growing back, like so!
September 21, 1997
More bad news. Blasts are beginning to spill over once again from my marrow into my blood. So technically, I am once again in blast crisis. The good news is that I still have no symptoms, and I continue my upward climb to normalcy. The bad news is that a patient in blast crisis is virtually untransplantable, so my doctor's absolute immediate objective is to succeed where last month we failed: to wipe out the blasts and knock me back into chronic phase leukemia. That means more chemo, using new drugs different from those used in the last round of chemo. So some time this week back into Hotel UCSF I go. At least this time I know what to expect (for some morose thoughts and whines about this, click here). I have a few days to get my body back into the good shape needed for chemo (that means pushups, situps, swimming, hiking, qi gong). I hope that this time it works. Because only then can I begin to think about transplant. :(
September 15, 1997
Drives continue, with the most spectacular being run by old friends and current colleagues all over the world. Now that I am no longer immunosuppressed, I give you all great big hugs. Last week the Berkeley contingent ran a huge bone marrow drive at University of California Berkeley and registered no less than 989 Asian registrants over a three-day period. And next week my uncle at Nan-Yang Technical University in Singapore is aiming also for 1000 registrants. The challenge is ON!
During the Berkeley drive, I acquired a high fever, something which is always viewed as very suspect in an erstwhile immunosuppressed patient who has just left the hospital. So back in the hospital I went, from Tuesday to Saturday, where I was pumped with sundry broad-spectrum antibiotics and antifungals to kill off that which we were not sure was there. Bad timing for me, for I was just recovering nicely from my previous hospital stay, and so was increasingly active and restless. But now I seem to be OK, and am back at home. Next: first formal consultation with the bone marrow transplant people...
In the hospital, I received some rather bad news. A bone marrow biopsy indicated that my previous round of heavy chemotherapy and one-month of hospitalization did not completely work. My claims of victory over the blast crisis were premature. Apparently I still have very large numbers of blasts not in my blood but still in my bone marrow. I am not in remission, and I am not in chronic phase. The situation is unstable, and calls for a transplant ASAP. I must admit, I am a bit scared, angry, frustrated, and sad. The good news is that my stomach is well enough for me to enjoy cheesecake.
September 7, 1997
Yay, I've escaped from the hospital! Of course, the hospital was not a true prison, but it began to feel that way after sitting there for more than a month. More important, my life-threatening blast crisis has been defeated for the time being [unfortunately relapse into acute leukemia is inevitable in a little as three months, and so I still have to find a match for a transplant before then...] and I can blame victory on the fantastic staff of UCSF Long 11 as well as my doc, Hope Rugo [for a pic, see bottom of the Illness page]. It was the hardest battle I have ever fought, and we won. Sort of like getting a glimpse of death and than walking away OK, but changed.
My hotel I mean hospital room had a beautiful view of the Golden Gate Bridge. I could see it every day for a month, but I could not go near it. First thing I did upon leaving the hospital, was to drive to the Golden Gate and breathe the fresh outdoor air.
Now I'm back home, in the loving tender care of Ako and my family. And now that I have access to The Net, I can finally see my website, about which I have heard so much over the past month. I see that it has grown enormously, from a little village to a small city, with people coming from everywhere around the world. And the messages in the guestbook that I have begun to read (only begun, there are so many) fill me and Ako with inspiration, hope, and gratitude. Thank you (that means you) for doing so much for a complete stranger.
Getting used to home life has not been easy. As you know, I was unable to swallow anything for about three weeks, so I am spending most of my time learning how to eat again. Thank goodness for Mom's traditional rice porridge; she has this way of making foods that are simple enough not to upset my recovering digestive tract but are still yummy. Other staples include baby food. But today saw a breakthrough ...Ako baked a quiche that was not just delicious but stayed down. Meanwhile, I'm also getting used to long walks and, hardest of all, climbing stairs. Anyway, I have to get in shape, so that I will be strong enough to undergo a transplant...
Finally, the hair is just starting to grow back, but very slowly. A visual facsimile of the process which will result in my new 'do' can be seen by clicking here! ;)
August 28, 1997
Good news: Alan has white blood cells again! Yay! Ever since the chemo, he's had practically none, which has contributed a lot to the overall misery he's been going through. White blood cells growing again means his body is regaining it's ability to fight off infection. This, in turn, means that he'll soon be off all the antibiotics he's been on. It also means speedier healing and regrowth of any damaged tissues, including the gastrointestinal tract, which has been the main source of trouble for him. In fact, he's even starting to "eat" again. When I talked with Alan this afternoon, he said he's spent most of today "reading, deciding whether a poop's a poop, and trying to eat Jello...." Of course, the best part of this news is, that his body's recovering from the chemo and he'll be home from the hospital soon!
So, looks like we won this first battle. That is, the chemo successfully pushed the blast crisis back into a second chronic phase, a necessary precondition before receiving a transplant. The bad part is that it doesn't buy us much time. This "remission" typically lasts only a matter of months before reverting back into the aggressive, acute form that will kill him. Alan's doctors are talking about doing a transplant within six weeks, which means that we need to find a donor NOW. The next few weeks are really critical for finding a match. Because of the time it takes for additional tests and procedures between registering and actually donating, if we don't find a match by September, most likely the beginning or middle of September, it may be too late for Alan.
I'm hopeful though. I know Alan's match is out there somewhere. It's just a matter of finding them.
August 22, 1997
As predicted, things have been pretty miserable for Alan in the hospital. (For those of you who are squeamish about medical stuff, you may want to skip this part; others who are curious, read on.....) The worst is the almost constant nausea and random abdominal pain. The chemo basically destroyed the lining of his stomach and digestive tract. He's also got something called "teflitis" (I don't know if that's spelled right) which is a bacterial inflammation of the descending colon, resulting in massive diarrhea and related unpleasantries. All this means that Alan had to give up eating, one of his favorite activities, and now has to rely on I.V. nutrition to sustain him. He's also on a ton of antibiotics, since he has virtually no white blood cells left to fight off infections, and has started receiving blood and platelet transfusions to replace what his own body's not producing.
His hair's gone (though not the nose hairs!) He actually looks quite handsome bald, not that I'm biased or anything. It started falling out in clumps soon after the last update here, so I borrowed some clippers from the nurses and shaved it all off. Zenda thinks he looks like a Buddhist monk, who, I hear, are quite popular with the ladies in Singapore ;)
We're still constantly amazed by all the attention and support we've been receiving. THANK YOU everyone, for all your support. Drives have been happening all over the place, and many have been quite successful: at UCSF they registered over 300 people in 3 hours. In Boston Chinatown nearly three hundred people registered at the August moon festival. We've also gotten a huge response from Malaysia. Thanks to all of you for your concern and willingness to help. Unfortunately, it seems that although there are plans to set up a donor registry in Malaysia, it's not up and running yet. Those who are near Singapore can register there. Others, maybe you can convince the powers that be to move a little faster in setting up the registry. On the media front, big news: MSNBC (Microsoft/NBC cable news channel) ran a great story on Alan last night, featuring this website.
Despite the media attention and drives, though, still no match.........
August 7, 1997
After a week in the hospital, Alan's done with his chemo: Ara-C and high dose VP-16. Now it's another three weeks of recovery from that before he can come home. He's in good spirits, although the side effects are starting in. Mostly gastrointestinal so far; they say the hair will go within the week. Bad news is, the next week will probably be pretty rough. Good news is, hugs are allowed! Other excitement this week: we did a press conference on Tuesday with good results. All three local tv news stations ran stories as did the Chinese news station, San Francisco Examiner, Sing Tao, and The World Journal (two big Chinese language newspapers). Associated Press picked up on it and did a story, AsianWeek will be running Alan's appeal as an op-ed piece, and a Sacramento tv station is also doing a story. So, the word is getting out; we just hope people will actually go and get registered!
July 30, 1997 AD
For the first time in my cancer career, I will be hospitalized for at least a whole month. The past three weeks of outpatient chemotherapy to control my cancer cells have been less than successful. Instead, the cancer cells escaping into my blood have slowly increased, causing very high fevers (exceeding 104¡F), aches and pains and sore joints, and nausea. If allowed to continue unchecked, these developments would eventually kill me, and so, to stop them my doctor has taken out the Big Guns, or rather somewhat bigger guns than before. These new therapies will be so harsh that I expect ulcers, vomiting, and loss of hair (does that include nosehairs?). Fortunately, here in San Francisco the bald pate is quite fashionable among the creative denizens of South-of-Market. Anyway, the worst side-effect will be suppression of basic bone marrow functions, including disappearance of my red blood cells, my platelets, and my immune system. Transfusions will solve the first two problems, while the immunosuppression will be addressed by 1) pumping me up with antibiotics and 2) keeping me in a sort of bubble. This special hospital 'clean room' will have reversed air-flow. Visitors will have to wash (thank goodness!) and change into sterile clothes. No flowers and no children! I will probably not be internetted. And I will be consigned to this kind of couch potato existence for one month. I fear insanity, as you can only watch so many Seinfeld's....
But the worse thing might be that I will be forbidden real hugs. ;(
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