8/11/08
There is no easy was to say this, but out it comes. Jonathan died this morning, August 11, 2008 at 2:45 am. The weekend was rough and sad, but when the end ultimately came, it was fast, calm, and peaceful. He was surrounded by family and friends, many of whom had been holding vigil at Mount Sinai for the past two weeks. Below is text of a notice that will appear this Sunday’s New York Times:
Jonathan Jude Boudreaux died at the Mount Sinai Medical Center in Manhattan on August 11, 2008, after a three-and-a-half year war with acute myelogenous leukemia. He was 36.
.Jonathan was born and raised in Thibodaux, Louisiana. He attended Nicholls State University in Thibodaux, and received a Masters degree in Theatre from Louisiana Tech University in Ruston, Louisiana. He moved to New York City in the autumn of 1996. He joined the Box Office staff at The New Victory Theater in the early days of the “new” 42nd street when shuttered porn shops still lined the street. He then served a brief tenure at the William Morris Agency before becoming Executive Assistant to the President of The Rolfe Company, a Manhattan-based agency representing theatrical designers.
A walking encyclopedia of American popular culture, Jonathan founded and served as Editor-in-Chief and Managing Director of www.tvdvdreviews.com, one of the first Web sites dedicated to reviewing television productions released on DVD. The site, which earned a loyal following for its pithy and timely reviews, regularly receives upwards of 3,000 visitors a day.
From the time of his diagnosis in February 2005 until his death, Jonathan met his cancer with characteristically fierce stubbornness, irreverent humor, black sarcasm, and an even-keeled, clear head. His tenacity – combined with the unyielding support of friends and family – enabled him to survive countless rounds of chemotherapy, two bone marrow transplants, two brain tumors, and a cord blood transplant. He left his family and friends after affirming on multiple occasions that he couldn’t have been happier and more content with the life he led and the adventures he shared.
Jonathan Boudreaux is survived by his longtime partner and companion, Christopher W. Czajka; his parents, Gail C. and Ronnie Boudreaux of Thibodaux; his sister Jenise and brother-in-law Brian Jennings, also of Thibodaux; his grandparents, Orena and “Red” Adams; and countless aunts, uncles, cousins, neighbors, and family friends in Louisiana.
He is also survived by scores of friends in New York City and across the country. Particularly steadfast in their support of Jonathan throughout his disease have been his boss and good friend Mickey Rolfe, Nicole Roberts, Kelly Demaret, Marsha Drummond, Kerri Chyka, and Sam Bufter, all of New York; Duane and Barb Czajka and Billie Lape of Rochester, NY; Kay and Eamon Daly and Katie Heilman of Chicago, IL; Allison Dillon of Nashville, TN; Caroline and Colette LaGarde of Raceland, LA; and the staff of the Education Department at Thirteen/WNET.
Jonathan will also be remembered and celebrated by a new generation of relatives and friends, including his nephew Draven Michael Jennings and young Norah Elizabeth Czajka and Ian Stuart Lape.
At Jonathan’s request, no memorial service or funeral will be held. His most ardent wish was for his family and friends to briefly mourn his passing, and then live their lives to their happiest and fullest potential. In lieu of flowers, donations can be made to the National Marrow Donor Program (www.marrow.org), which provides patients around the world with life-saving bone marrow, cord blood, and stem cell transplants.
At Jonathan’s request, no memorial service or funeral will be held. His most ardent wish was for his family and friends to briefly mourn his passing, and then live their lives to their happiest and fullest potential. In lieu of flowers, donations can be made to the National Marrow Donor Program (www.marrow.org), which provides patients around the world with life-saving bone marrow, cord blood, and stem cell transplants.
He will be sorely missed.
7/24/08
This entry has been created by Jonathan (with editorial input from Chris):
Hi all. I hope everyone has been enjoying their summers while I've been whiling away my days in my transplant room. I'm feeling ok today; I haven't had any fevers for three days, the latest x-rays show that whatever is going on in my lungs is not progressing, and the breathing issues I've had for the past few days are still with me but under a little more control. I'm awfully tired and it takes a lot of energy to do everyday tasks.
There is no easy way to present this news, but here goes: according to the doctors, a recent blood test shows that I still have quite a bit of active leukemia in my bloodstream. At this point in the transplant process, there should not be any at all. The doctors are going to pull me off of the limited immunosuppression I'm on, in hopes that I will get some raging GVHD. But all in all, according to the doctors, there is now very little hope that I will recover.
That's not to say we're giving up. The doctors are going to continue to provide as much care and treatment as possible, but we're starting to face the difficult reality that, after all we've been through in the last three and a half years, my battle with this disease may be coming to an end.
Over this coming weekend, we are going to talk with Dr. Doom and Gloom about what options are before us, what my wishes are for my treatment and comfort in the coming days, and how best those wishes can be met. We have received no sort of timeframe or estimates on what will be happening when, and if the last three years have proven anything, it's that the strain of leukemia I've got is very unpredictable. There is a lot of uncertainty.
However, there are several things I am certain about. I have had a wonderful and happy life, filled with friends, family, love, accomplishments, and a LOT of laughter and fun. Despite all of the hurdles of the last three years, we have managed to be quite happy, due largely to the care, support, generosity, and good wishes of all of you.
We will continue to post news here in the coming days as time permits. Chris is on his usual weekend shift, so the earliest there will be a new post is Sunday.
7/23/08
Today was a tough day. No results are back yet from yesterday’s bronchoscopy, so we are in a holding pattern until they can determine what sort of bug is in Jonathan’s lungs. When he is at rest and in bed, his breathing is pretty much ok. However, whenever he exerts himself (and by “exert,” I mean move from the bed to a chair or to go to the bathroom), he becomes very short of breath, as if he’s just jogged a mile. His breathing got so bad this afternoon that the nurses gave him and oxygen mask to wear when he needs it. Fortunately, however, he still doesn’t have a fever, which means that one of the many medications he is receiving is doing something.
I am also sorry to report that he is very much down in the dumps. The frustration of yesterday, the lousy way he’s feeling, and the physical and psychological torture of the transplant hit him very hard today. We’re closing in on a month in the hospital, and even for Jonathan, it’s hard to keep even a semi-optimistic, matter of fact attitude all the time. By the time I left this evening, he was doing a bit better. But if you have time today, it would be great if you could call and give him some words of encouragement, support, love, prayers, whatever on the answering machine. Again, the number is (212) 241-1375.
7/22/08
Today was an extraordinarily long, extremely tiresome, and unbelievably frustrating day at the hospital. I don’t have the energy or brain power to record the whole story, but suffice it to say that due to Mt. Sinai’s perennial chain-of-command issues and ongoing administrative f^%$#-ups, Jonathan got a bronchoscopy today, but no biopsy, because the various parties responsible couldn’t manage to communicate effectively with each other. If it wasn’t such a serious matter, it would be worthy of farce: missed telephone calls, wrong reports read, directives ignored. And in the midst of all of it, Jonathan had a nice invasive procedure which wiped him out even more, made him feel even crappier, and is not the test the BMT doctors were hoping to have him get in the first place. I’m waiting for the doctors to say that he has to undergo the bronchoscopy again and actually have the biopsy, at which point I will be calling an attorney.
He came through the procedure all right, and by the time I left tonight he was sitting up in bed and watching TV. The good news in all of this is that his fever has been gone for most of the day, and his shortness of breath and chest pain seem slightly improved. The results of today’s mess—if there are any that can be of use to the doctors—won’t be in for a few days.
Some day, all of this frustration and rage with the hospital will be channeled into something productive. For now, I am going to bed.
7/21/08
Well, the bone marrow transplant team, the infectious disease team, and the pulmonary specialist team have all looked at Saturday’s CT scan of Jonathan’s lungs, and they’ve all reached the same conclusion: they can’t tell specifically if he has pneumonia, a fungal infection, GVHD of the lungs, or some other appetizing prospect.
His breathing continued to improve today, though it’s still not back to normal. His fever was nonexistent to low grade on and off all day long. He still has the GVHD rash, and they’re hoping to let him stew in it for a few more days. However, their top priority is deducing exactly what is going on in his lungs.
To that end, they’ve decided to do a bronchoscopy and biopsy tomorrow. The hope is that they will be able to get a sample that will tell them what is going on, and then they can adjust his medications accordingly. We’re hoping that they determine it’s not fungal, so that they can stop the Amphotericin, which can cause some pretty catastrophic side effects.
Of course, the other two times we’ve done this exercise in the past, the biopsy was inconclusive and the doctors later decided it was GVHD. Jonathan had some misgivings about the test, but he’s decided that he just needs to do it so we can get the best course of action. It will be a full-day production number tomorrow (no eating after midnight, prep time, anesthesia, procedure, etc). We will keep our fingers crossed that it all goes without incident.
7/20/08
It was a bit of a roller coaster weekend. . .some ups, some downs, but now seemingly everything is under control and heading in the right direction.
Jonathan woke up Friday morning with a nasty, splotchy rash covering most of his body. The doctors were ecstatic (literally), because they are pretty certain it’s GVHD. . .the cord blood is attacking Jonathan’s body, and hopefully eating up the leukemia cells like Pac-Man. The trick with GVHD is that they don’t want to treat it to soon, and suppress his new immune system before it has a good chance to go after all of the leukemia. So they decided to keep an eye on the rash and everything else to be sure it didn’t get out of hand. During the day on Friday, he still had the slight cough. Friday night, he had some episodes of shallow breathing and he coughed when he moved around too much. Friday night, they gave him a medication to help with the itching from the rash (mind you, he didn’t have any). Unfortunately, the medication gave him a poor night’s sleep where he woke up every fifteen minutes or so with some mild hallucinations (i.e., he’d wake up and ask me, who was pretty much sound asleep, “What did you say?!”). So that was diverting.
On Saturday morning when he woke up, his breathing was very shallow and he was extremely fatigued. He got out of bed to eat breakfast, and pretty much had to go back to bed and lie down because he was so tired. He also had some pain in his chest when he was inhaling. The doctors sent him for a CT scan, and by mid afternoon had determined that there was indeed something going on in his lungs. Now mind you, EVERY SINGLE TIME in the last three years when Jonathan has had bouts of GVHD, it’s manifested as a) a rash, and b) breathing issues. We’ve been to this circus before. However, to be safe, they wanted to do the CT scan to see if he was possibly developing pneumonia or a fungal infection. After looking at the CT scan, the doctors were undecided on what it actually is. However, just in case it’s a fungal infection (and they won’t be able to definitively determine it for a few more days), they have to start treating it as if it IS a fungal infection, because they can be extremely dangerous. So they jacked around his antibiotics (in case it’s pneumonia), and also prescribed a new drug called Amphotericin (known among doctors as “Amphoterrible”) to start it in case it’s fungal. We were warned that some people have a pretty horrible reaction to it, and braced ourselves for a rough night. Fortunately, the drug went in without incident (if you don’t want to sleep tonight, google “amphotericin side effects”).
This morning he was feeling a bit better, though still having some breathing issues and some chest pain. Sunshine and Rainbows was on duty, and when we expressed our “mild alarm” at the possibility of pneumonia or a fungal infection of the lungs, she said, “Oh, no. . . everybody gets those during transplants like this,” as if she were a suburban mother explaining a first pimple to a teenybopper. So whether it’s GVHD, pneumonia, or A fungal infection, he seems to be improving and responding to all of the treatments they’re hurling into him.
I will keep you posted as the week progresses.
7/17/08
Very quiet day at the hospital. Jonathan’s temperature is still hovering up near 100, but it has not yet gone to or above 100.5, which is the doctors’ “official” fever temperature. So far, none of the tests they’ve done have revealed anything suspicious. He still has a bit of the dry cough.
Today, he was a vampire and received a platelet transfusion and three buckets of blood (ok, they were just bags). He was anemic and the doctors suspect the blood products will pep him up a bit and hopefully address his shortness of breath issues. Because of all the transfusions, he got a lot of Benadryl, and consequently slept for a large part of the day. His counts are holding steady, which is great because it should mean that the remaining leukemia is not going berserk and multiplying like crazy.
Against my better judgment, I went online the other day and looked up some info on cord blood transplants (I don’t recommend doing so if you want to sleep tonight). Anyway, I found a study from 2005 that said the average length of time from transplant to engraftment was 30 days. If you’re counting, we just hit 15 days since the transplant.
This will be the last update until Sunday afternoon, as I am on overnight duty tomorrow and Saturday.
7/16/08
The fever left, then it came back again.
By midnight last night (Tuesday), Jonathan’s low-grade fever was gone. It stayed away for most of the day, and it was back around 4:30 pm. Today it was a bit lower, about 99.6. He is still feeling mostly fine, just fatigued, though he has been getting a bit winded when he moves around too much. They repeated the chest x-ray to see if there is anything awry in his lungs. We are having unpleasant memories of our stay last November when his breathing got funky and no one ever definitively determined what it actually was. So the doctors and nurses are watching him carefully to try and determine what’s up. True to form, Jonathan is very matter of fact about it all.
Please keep up with the phone messages, they really brighten our days. And a very special “Happy Birthday” to Ian “Goofball” Lape, our de facto nephew, who turns 3 today!
7/15/08
Well, we’ve hit a stumbling block (or rather, “blocks.”) This morning, Dr. Doom and Gloom announced that yesterday’s blood tests definitely show leukemia cells. Doom and Gloom reiterated that our best hope is that the cord will engraft “with a roar,” and wipe out the remaining leukemia. The “roar” will hopefully be a bout of graft vs. host disease. They’ve taken Jonathan off all of the immuno-suppressants and other drugs that would prevent/calm the cord cells from attacking his body. Fun stuff.
Most of the day was fine, but when the aide took Jonathan’s temperature tonight at 8:30, he has a slight fever of 100.6. They immediately began doing blood cultures and collecting all sorts of specimens from him to send off to the lab. He feels ok, just fatigued, and he still has his slight dry cough.
We’ve been down this road before. Now, they will do every test known to medicine to try and pinpoint exactly the cause of the fever (which they sometimes manage to do and sometimes just come up with some educated—and often incorrect--guesses). We will keep our fingers crossed and I’ll keep you posted.
7/14/08
A quiet day at the hospital. The doctors had very little to say, other than they are “keeping their fingers crossed” that when the cord blood engrafts it will eliminate any of the lingering leukemia cells. Dr. Doom and Gloom, who is on for the next two weeks, is hoping that Jonathan will get a nice nasty GVHD rash when the cord attacks.
The big news of the day is that Jonathan is as bald as a ping-pong ball again. We were hoping that he’d keep his scanty locks, but the chemo and radiation apparently did the trick. His hair has been falling out steadily for the last few days, so tonight we just shaved it all off.
He will be getting a platelet transfusion tonight. As a reminder, please call and leave messages at (212) 241-1375. Don’t worry about being clever or funny. . .it’s just nice to know that people are pulling for him!
7/13/08
The weekend passed well in the transplant unit. Jonathan was feeling pretty fatigued for much of the weekend, and needed a platelet transfusion on Saturday, but all in all he’s doing pretty well.
On Friday, we did get some rather ominous news. Apparently, the blood they drew from him Friday morning showed some blast cells. . .immature white blood cells which can be evidence of leukemia. However, the doctors aren’t quite sure if they were rogue leukemia cells, if they were from the cord blood, or if they will get eaten up when the cord blood engrafts. Nobody is sure what the cells mean, and only time is going to reveal what they are. The weekend doctors have hypothesized that Jonathan’s white count should continue to go up, and engraftment will “announce itself” (their term, not mine), sometime in the next week to week and a half. At that point, we shall see what we shall see.
In happy news, our friend Billie Lape was here for most of the weekend from Rochester. She spent the day Friday with Jonathan, Ronnie, and Gail in the transplant unit, and did a lot to break up the mind-numbing routine we’ve got going. We also kidnapped Gail and took her on a brief field trip to Ikea on Long Island, where she was astonished at the bargains and gadgets they had. Also visiting Jonathan today is our friend Katie (originally from Rochester but now from Chicago, who’s spent many Thanksgivings with us). Katie is in the midst of touring an old friend from Russia around the Midwest and East Coast. Jonathan had a good time with these special visitors.
We will see what the coming week brings. I am off to eat takeout, listen to “The Big Broadcast,” and go to bed.
7/10/08
Today was a bit of a busy day at the hospital. The access line through which they give Jonathan chemo, antibiotics, blood products, etc. was only good for two weeks, and then it has to be replaced to prevent infections. So the morning began with Benadryl and other pre-meds, because Jonathan had to get platelets prior to the simple line placement procedure. He went down and got the line at about noon, but the problem (of course) is that they have to check the placement of the new line (which is in the left side of his neck) before they remove the old line (which is in the right side of his neck). Apparently, the line placement people had a busy day, because they had not managed to confirm the placement of the new line by 9 pm tonight. . .so he is stuck for the night with two lines. His neck was a bit sore, and it’s obviously not convenient or comfortable, but it looks like the old line will be removed tomorrow morning.
He also has a very intermittent slight cough. If it were a normal and healthy person, you wouldn’t even notice it. But we brought it to the attention of the doctors and they are going to be giving Jonathan some tests to make sure that everything is under control. He hasn’t had any fever, so that is encouraging.
In happy news, our friend Billie Lape drove down from Rottenchester to visit for the weekend. She will be spending her days at the hospital as the entertainment committee.
I will be on overnight duty at the hospital tomorrow night and Saturday night, so there won’t be any updates until Sunday. Feel free to send Jonathan emails and call the Transplant Hotline at (212) 241-1375 to leave messages.
7/9/08
Very quiet day at Mt. Sinai. Jonathan was very tired and slept much of the day. Still no fevers or any other problems. This morning when I asked Sunshine and Rainbows if there was anything I should be worrying about, she replied, “Global warming, and whether or not Obama will win in November.” Given everything he’s been through, it’s pretty understandable that he’s tired.
You will be happy to know that cable television has been restored to Mt. Sinai. Other than that, there’s thankfully no other news.
07/08/08
Another smooth and very quiet day at Mt. Sinai. Jonathan had to get a platelet transfusion, which is not unexpected, and as a result of the Benadryl and other pre-meds they give him before transfusions, he was conked out for much of the afternoon. This evening he ate dinner and we played a few rounds of cards and some Boggle. When I left the hospital, he and Ronnie were watching “Transformers” on the Mt. Sinai in-house movie channel. Apparently, the 11th floor construction has knocked out the cable to the cancer ward, and the only programming available is on the hospital’s closed circuit channels, which include all sorts of helpful “what it’s like to go through labor” videos, a channel with a clock, and another channel with a starry, starry sky that plays New Age music. Good thing we have lots of DVDs.
We got another piece of good news today: yesterday, they drew a sample of cranial fluid from the port to make sure that the leukemia hadn’t infiltrated Jonathan’s nervous system again. Thankfully, the results came back negative, so he’s holding his own on that front, too.
It’s hot, humid, and beastly here.
7/7/08
Another thankfully uneventful day at Mt. Sinai. Jonathan continues to feel fairly well, with no fevers, infections, or major issues of any sort. He is whiling away his days napping, watching DVDs, and surfing the Web. Tonight after work, I ran into Sunshine and Rainbows on the street (with her father, incidentally), and her assessment is that he is doing “beyond exceptionally well.” We’ve just got to keep on this current trajectory until the cord blood engrafts.
In other exciting news, they have started a major construction project on the cancer floor. They are building a “step down” unit for transplant patients, sort of like a mini-ICU for patients with extreme complications following their transplants. I think Jonathan’s insurance company has most likely paid for the whole project. We should have a plaque naming him as the benefactor.
I will keep you posted as the week progresses.
7/6/08
So far, so good. The weekend mercifully passed without any sort of complications or emergencies. Jonathan’s blood counts are all exactly where they are supposed to be, and he has not a single white blood cell in his body. He is feeling ok, his main complaints being fatigue and a mildly upset stomach (most likely as a result of the gallons of preventive antibiotics they are pouring into his system). All in all, he is doing fairly well. Sunshine and Rainbows returns to the floor this week; we’ll see what her assessment is tomorrow.
Of all the Fourth of Julys to spend in the hospital, we picked a pretty good one. It has been completely overcast, dreary, and cool but humid since Thursday. We didn’t feel as though we were missing out on much. We watched movies (including THE MUSIC MAN), played a lot of Phase 10 and Boggle, and had a steady stream of visitors and answering machine messages to keep us entertained.
Today was Gail’s birthday, so we surprised her by decking the room in birthday paraphernalia, having cupcakes from Martha’s Country Bakery in Forest Hills, and opening a few gifts. Some of the Northwestern Mafia stopped by and joined in the festivities. All in all it was a nice day. We are looking forward to (and very much hoping for) a very boring week.
7/2/08
Today could be called “Attack of the Monster Baby.” Surprisingly, right on schedule at 12 noon, the chafing dish lady showed up with the bag of frozen cord blood, which she stewed up in the chafing dish. Sunshine and Rainbows and all of the nurses were aghast at the amount of cord blood in the bag. . .they all swore that they have never seen so much blood from a single cord. They speculated that the baby that was attached to the cord must have been 25 pounds at birth. We were pleased to hear this, since the more stem cells shot into Jonathan’s body, the better. Sunshine and Rainbows, as well as the nurses, apparently had a “talk” with the cells before they began their trip into Jonathan’s body. It’s nice to know that we’re not the only ones with a smidgen of superstition and humor.
The cells went in over a two hour infusion. Jonathan was pretty drugged up for much of the day, as they had to give him all sorts of pre meds. During the infusion, his blood pressure rose very high (which is a normal side effect), and he got a bad headache. Both the blood pressure and the headache were resolved with even more drugs. So he was pretty stoned for much of the proceedings. We listened to all sorts of inspirational music from the iPod during the transfusion, including Jonathan’s de facto “theme song” for this round of medical drama, Mary Chapin Carpenter’s “I Take My Chances.”
Once the high blood pressure and headache went away, he felt fairly well. He almost gave both his mom and I coronaries at one point, but all was well (I have a feeling he would beat me if I gave away the gory details of what happened, so you’ll just have to ask him. . .if you’re brave enough). By this evening when I left, he was sitting in a chair reading a magazine.
He also determined how people can leave longer messages on our bargain basement answering machine (many of you have been cut off mid-sentence). Apparently, once you hear the beep to leave a message, if you hit * and then the number 1, you can talk for up to five minutes.
Now, we wait and see what the cord cells can do, and how well Jonathan’s body can deal with no immunity. I will be on the overnight shift at the hospital tomorrow and Friday at least, so there won’t be any updates here until late in the weekend. If you’d like to email Jonathan, he’s been checking his inbox (Mt. Sinai FINALLY finished installing wireless Internet throughout the hospital), and the address is jonathan@tvdvdreviews.com. Have a happy Fourth of July (we are experts at hospital holidays, and we’ve determined that Thanksgiving is the only major holiday of the calendar year we haven’t spent in the cancer ward at some point during the last three years). We’re contemplating setting off Roman Candles in the Mt. Sinai atrium. Keep good thoughts going his way!
7/1/08
All systems are go for tomorrow’s transplant. Jonathan received his blast of fill body radiation this afternoon at about 2:15, and his white blood count has dropped to zero. So far, he is tolerating the radiation very well, and did not even need nausea medication when he returned to the floor. Sometime tomorrow in the late morning or early afternoon (which, in Mt. Sinai time, could be 6 pm), they will bring in the frozen bag of cord blood, heat it up in the chafing dish, and pump it into him. We’ve been warned that he will yet again reek of Campbell’s Tomato Soup (see our adventures last October and March for more on that).
We’ve heard differing estimates from a variety of hospital staff on how long it will take the cord blood to engraft. ..from as few as three weeks to as many as six weeks. He will be in the hospital until that happens. The best case scenario will be a long, boring, and uneventful wait, but we will just have to take each development as it comes. Six weeks is an awfully long time to be without any immunity.
Be sure to send him your good thoughts, wishes, and prayers in the late morning and early afternoon!
6/30/08
Hi all. Today was a pretty good day. The chemo has largely done the trick of eliminating Jonathan’s bone pain, and the blood transfusions he got yesterday have given him a bit more energy (and color. . .he was as white as a sheet yesterday. . .including his lips). He spent the day washing up, taking naps, and watching the soon-to-be released DVDs of MANNIX with his dad.
On a biological level, he has quite a bit going on (to say the least). Currently, the chemo is coursing through his veins wiping out the majority of his white blood cells (and hopefully the leukemia as well). Heiner the German’s bone marrow, which has served us well since October 2005, is in the process of being obliterated for good. Tomorrow, the so-called “rest day,” Jonathan will get a blast of radiation that will kill off the remainder of his white blood cells. He will then officially be “immune system free”. . .a blank slate. . .before the cord blood is introduced on Wednesday. He has joked that “the third time’s the charm,” because he will now be getting his third complete immune system. After the cord blood goes in, we begin the long wait for engraftment, when the risk of infections will be very high.
His spirits are pretty good now that he’s feeling better. We’ve been getting and listening to answering machine messages and they cheer us all up and make us laugh. . .so keep calling.
6/29/08
We’ve made it through the first weekend back in the Transplant Unit. Things are not off to the most positive start. By mid-day Friday, the doctors had determined that Jonathan’s severe bone pain was actually being caused by the leukemia. He had an extremely elevated white count, which has the result of his bone marrow going bonkers trying to deal with an escalating level of leukemia cells. We were particularly upset about this, until Sunshine and Rainbows pointed out to us that “we already knew the leukemia was there,” which I guess is true, but it’s unfortunate that a) there’s more of it, and b) it was causing Jonathan so much pain. The thought is that as the chemo goes to work, it will eliminate many of the leukemic cells and Jonathan will feel better.
By Friday evening, they managed to get his pain medication squared away, and he was feeling better. Friday night, he had to get a platelet transfusion, which led to a continuous stream of nurses in and out of the room all night. He’s also has a low-grade fever that has been coming and going, but the doctors suspect that it’s simply a side effect of the chemo. Saturday morning, the doctor on duty reported that Jonathan’s counts are doing exactly what they should be doing. Today (Sunday), Jonathan was very tired, and they deduced that his hemoglobin was very low, and that he was going to need several blood transfusions. By the time I left at 5:30, he had just received the first bag of three.
The days at the hospital this weekend seemed very long to all of us. We’re not sure why, but time seems to be passing very slowly. I think we’re all ready for the chemo to be over and the “main event” of the transplant to take place. As I mentioned Friday, feel free to call the Transplant Hotline at (212) 241-1375. You can leave a message, or if Jonathan feels up to talking, he may even answer the phone.
Ronnie is staying with Jonathan tonight. Gail is at the TLC doing laundry, and I have come home to pick up the apartment, take a shower, and collapse into bed. I will keep you all posted as the week moves forward.
6/26/08
Well, it wasn’t a banner first full day in the hospital. Everything is under control, but today, of all days, Jonathan’s back chose to go out. He went down for his scheduled line installation, and laid on an uncomfortable gurney for too long, and his tricky back got out of whack. For a lot of the afternoon, he was very uncomfortable and in a lot of pain. Just to be safe, the doctors drew out some fluid from the port in his head , to make sure the pain isn’t related to leukemia in his nervous system. Personally, I don’t think it is. I think he just has a bad back, he was in an uncomfortable position, and he’s under just a little bit of stress. If it does turn out to be leukemia in his nervous system, not only will I eat my words, but I may become violent. By this evening, though, they had stuffed him full of pain medication and he was feeling much better.
The first round of pre-transplant chemo began tonight and it will continue through Tuesday. Unfortunately, it doesn’t seem like he’ll be having a very restful night. . .the nurses have to wake him up every two hours so he can make a trip to the bathroom, because the chemo can damage his kidneys and bladder. At 4 am or so, they have to give him what are comfortingly called “rescue drugs” to counteract some of the more dangerous side effects to the bladder. But by the time I left to come home at 9:30, he was tolerating the chemo well and pretty tired for all the pain medication and pre-chemo medication.
Jonathan’s dad is arriving tomorrow morning, and Gail checked in to the TLC today. I will be staying at the hospital tomorrow night and Saturday night, so don’t look for an update here till Sunday.
Since it worked so well during the first transplant, we are resurrecting the “transplant hotline”. . .we are putting an answering machine in Jonathan’s room, so that people can call and leave messages of support, encouragement, love, etc. Call with a weather report or a dumb joke. Call and have your children sing songs. Call and tell us your weekend plans. Call just to say hello. We will turn the ringer down, so call anytime, and then we’ll listen to your messages when he is feeling up to it. The number is (212) 241-1375. We would all sure like to hear from you.
6/25/08
Hi all. It’s ghostwriter Chris taking over the Web site. Well, we’re off. This morning at 9:30, we got a call from Mt. Sinai telling us to be in Admitting at noon (so much for the plan of getting admitted “this Friday or next Thursday,” which is what they told us two days ago). By 1 pm, we were settled back in to Room 221, aka “The Christmas Room,” where we spent transplant #2 back in December. Out of all the rooms on the cancer floor (and trust me, we’ve experienced the majority of them), it’s our favorite room. We have decked it out with pictures and postcards and general ephemera. If you are reading this, chances are good you a represented somewhere in the room.
The plan now stands as this: in the wee hours of tomorrow morning, Jonathan will get a platelet transfusion. Later in the day, he will go in for “line placement,” so that he has a semi-permanent port with which to receive chemo, blood transfusions, drugs, etc. Tomorrow afternoon, he will begin the pre-transplant chemo regimen. He will get chemo tomorrow, Friday, Saturday, and Sunday, and Monday. Tuesday will be a “rest day,” on which he will get a blast of full-body radiation, and on Wednesday, he will receive the cord blood transplant. By the doctors’ best guesstimate, it will take two weeks or more before the cord engrafts and sets up shop in Jonathan’s body. The two biggest risks he faces are opportunistic infections, and a delightful syndrome called veno-occlusive disease, which is essentially when the liver decides it cannot tolerate any more chemotherapy and initiates full-body shutdown. The doctors, of course, will be watching him carefully for both.
The cavalry is fully mobilized and we have gone back into “hospital mode.” Gail will be at the hospital overnight tonight and tomorrow with Jonathan. Jonathan’s dad arrives on Friday morning. We’ve booked Gail and Ronnie back into the Transplant Living Center, a few blocks away from the hospital. I will spend Friday night and Saturday night with Jonathan. Our New York City “family” is galvanized and ready to visit, help out, and provide moral support if needed. The Northwestern Mafia is on high alert. And we have friends across the country who are “waiting in the wings” to be here at a moment’s notice should we need them. The folks at my job are being tremendously supportive and understanding. Once again, in the midst of this mess, we are very, very lucky indeed.
As always, I will try to post updates here as often as possible. Please keep your prayers, good thoughts, and positive energy going Jonathan’s way. As someone once said, “the journey of a thousand miles begins with one step.” Like it or not, here we go.
June 24, 2008
CHEMO BRAIN!!! You know, I even write lists of things I need to do, like updating the cancer blog, and then I forget to look at the lists again. Cancer is fun!
Friday we went in and found out that my blood counts were okay enough that I didn’t need any transfusions. We then marched off to take a breathing test and a heart test, both of which are needed before the transplant.
On Saturday and Sunday, we went out to dinner at our favorite restaurants (Virgil’s BBQ and Rosa Mexicana) and did a little shopping. It was a fun break from sitting around the apartment.
Yesterday we went in for another blood check (just fine) and for more info about when the transplant might take place. Several things have to be met before I can go in. First, the cord blood has to be received by the hospital. It was officially requested yesterday morning. The next thing is that there has to be a bed open for me. Finally, the treatment has to start on a Thursday or a Friday to guarantee that the transplant will be done on a weekday rather than a weekend. So I could be admitted as early as this Thursday, but chances are it will be next week instead.
Here’s a preview of what will happen once I’m checked in. I’ll get four days of Fludarabine chemo. On the fifth day, Busulfan will be added. The sixth day will include on Busulfan. This will be followed by a rest day. It won’t be much of a rest day since I’ll be receiving full body radiation. The next day—one week after I’ve been admitted—the cord blood will be infused. And then...we wait.
And that’s about it. We’ll let you know whenever the admittance day gets clearer.
June 19, 2008
Hello lads and lasses! (Lassies, too. What a nice dog!) Yesterday was a nightmare. I had an appointment with the BMT clinic to get my blood counts done and any preliminary results they might have had about last week’s biopsy. My appointment was at three. They were so understaffed that I didn’t get to see a doctor until five. My platelets had dropped from 12 Monday to 4 yesterday. Obviously, I needed a transfusion, but by this point the blood bank’s transfusion center was closed for the day, so I was sent to the E.R. I was told that they don’t do transfusions in the E.R. anymore—they’re only set up for emergency patients. I guess that platelets dropping from 12 to 4 isn’t an emergency. They insisted that I would have to be admitted in order to receive the transfusion, especially since I needed six bags. We told them that was fine, but we were going to leave when the transfusion was done and we would appreciate it if they could at least start the transfusion in the E.R. since I was there already. They agreed to do what they could.
Three hours later I was transferred to a room, still without any platelets given. Another hour passed, so we called in the nurse to see what the problem was. Apparently the order had not even been placed with the blood bank yet, so she was waiting for that to get done. We were furious and decided to call one of the BMT doctors to see if anything could happen to speed up the process. She yelled at the nurse, and within 30 minutes bag 1 arrived. The bag took 45 minutes to go in...and then another hour passed. We called in the nurse to find out what was wrong. She said that she was trying to find out exactly how many bags of platelets I needed because the blood bank was asking about it. We pointed out that no matter how many I needed (the number kept bouncing between 4 and 6), I had only received one, and they should at least send up the second bag while they figured everything out. Bag two eventually arrived, took 45 minutes to go in...and then nothing.
We asked again what the problem was. She said that the blood bank had run out of platelets and was sending for more. I was infuriated. By this point, we had been at the hospital for almost ten hours. Couldn’t they have figured this out earlier? After waiting several more hours and demanding to see the attending physician (who never showed up, by the way) the platelets arrived. By the time all was said and done, we were finally finished at 4:30 AM. We struggled to find a cab and got home around 5:30 AM. I went straight to bed and woke up about a few hours ago.
At least this frustrating experience took our minds off of the biopsy results. The chemo I was given two weeks ago seems to have had very little effect on my marrow. I have leukemia blasts in my system, and the decrease in trisomy-8 was minimal. Over the next few days I need to take a few preparatory tests (lung function test, MRIs, etc.) to get ready for the cord blood transplant next week. As an inpatient, I will get one round of full body radiation, more chemo, and then the transplant. The odds of a cure are not great, but the BMT doctor said that she personally knows of at least three patients who were in a similar position who managed to survive and thrive after the cord blood transplant. We’ll pass along more details as soon as we get them.
And that’s about it. I’m exhausted and extremely annoyed, but what’s new? Hopefully I’ll be able to rebuild my strength and healthy attitude over the next few days.
June 14, 2008
Hello everybody! Yesterday I went in, had my head port tapped, my bone marrow biopsied, and received another unit of platelets. With all of the meds and premeds they gave me, I think I was awake for maybe four hours out of twenty-four.
We should be getting preliminary results at some point next week. I’m also going to have my blood count checked Monday just to see if I need more platelets.
Have a great weekend!
June 12, 2008
Howdy folks! First off, I want to wish a great big happy birthday to my sister Jenise. Have a good one!
Yesterday I received another unit of platelety goodness. It left me feeling fine but tired (hooray for Benedryl!). Tomorrow I head in for a biopsy, which will probably also leave me tired (hooray for Ativan!).
That’s about it for now. I hope you are all doing well.
June 9, 2008
I trust that everyone is staying out of the heat. It was pretty warm when we ventured out to the BMT clinic this morning, but then I thought, “Well, at least I don’t have to go underground and take the subway!”
The appointment today was pretty uneventful, but we have at least a tentative idea of how the next few weeks will play out. Wednesday I will go in to get my blood drawn just to make sure that I don’t need another unit of platelets. Friday, I will have a bone marrow biopsy.
Depending on the results of the biopsy, one of two things will happen. If my trisomy-8 has not been reduced sufficiently enough, I will receive another round of Texas dirt chemo. If the trisomy-8 is gone or mostly gone, then we’ll go right into the cord blood transplant stage. I’ll be admitted to hospital, receive more chemo, and then receive the transplant.
And that’s about all we know. In the meantime, we’re trying to stay cool and entertain ourselves. We’ll keep posting as the info comes in!
June 7, 2008
You know, I keep thinking that I need to do an update...right about the time that I’ve shut the computer down for the day and am heading for the shower. Chemobrain!
This week went pretty well. Thursday I received a unit of blood and a unit of platelets. Yesterday I received another unit of blood. Frankly, I don’t know why they didn’t give me this stuff sooner—I felt instantly better. Monday we go back to get another blood count.
In other fun news, I started a couple of projects with my mom. Everyday we exercise on the Wii Fit. My mom mostly does aerobics stuff—she’s great at jogging—and I focus on breathing and balance. We’ve also started our own little film club. I’m showing her a favorite movie from my DVD collection each day. We’ve been having a great time.
That’s about it! I’ll post again as soon as my chemobrain lets me!
June 2, 2008
Hello everybody! The Texas dirt chemo went fine Friday. I was exhausted after the day was done—I came home, was too tired to take a nap, ate enough cereal to enable me to take my meds, and then headed to bed for twelve hours. Oddly enough, I woke up Saturday feeling better than I have in months!
We didn’t do much this weekend, just enjoyed sitting around the apartment watching movies (Raiders of the Lost Ark, The Kings of Kong) and relaxing.
I had a follow-up appointment today to get my blood count checked. Everything is where it should be at this point. Thursday I’ll go back to make sure I don’t need a platelet transfusion. There is still no definite plan as to when I’ll get the cord blood transplant, but we should have more information in the coming weeks. I may even get more outpatient chemo depending on how my body responds to this round.
And that’s about it! We’ll keep you updated.
May 28, 2008
Hi folks! This is just a quick update to let you know that I’m feeling fine. The chemo is going well so far with very little side effects beyond fatigue. My mom arrived Sunday to help me get to and from the hospital, and we’ve settled into our little routine.
So far, there is no news about when the cord blood transfusion will take place, but we will be sure to keep everyone updated as soon as we learn anything. In the meantime, I am ready to take a shower and go to bed. Good night!
May 23, 2008
Hi friends! I am sorry to report that after completing the first leg of The Grand Tour, the rest of the tour has now been postponed. The bone marrow biopsy from last week shows no blasts of leukemia cells, but I’m down to 75% donor marrow, the trisomy-8 abnormal chromosome is on the rise, and a relapse into full-blown leukemia is inevitable.
Here is the new treatment plan. Starting Tuesday, I will receive four daily outpatient doses of chemo, including good old Mylotarg (made from Texas dirt). That is to help reduce the trisomy-8 load prior to the cord blood transplant. Once that is done—probably within the next two weeks—I will be admitted to the hospital, and receive even more chemo, this time with a pair of meds that I’ve never had before. When my marrow is completely wiped out, I’ll get the cord blood transplant.
The cord blood transplant carries a far greater risk than the bone marrow transplants did. Cord blood isn’t fully formed, so it takes much longer to engraft than bone marrow. It can take as long as 30 days for the cord blood to engraft and re-boot my system, which will mean a long hospital stay and a longer window of time for opportunistic infections to invade my body. The doctors also aren’t sure, at this point, how much more chemotherapy my body will be able to tolerate. All in all, we are in a very tight corner, and once again, our choice is to either actively try and treat the disease, or simply wait for it to run its course. The road ahead is going to be very tough and scary, but we don’t think we really have any choice but to move forward and hope for the best.
On a lighter note, we had a great time in Louisiana. Click here for pictures.
The Grand Tour might be postponed, but we hope to reschedule all of the remaining visits. In the meantime, you can continue to follow our exploits at www.tvdvdreviews.com/press/cancerland.html.
May 14, 2008
Hi pals! The Grand Tour starts today, so don’t expect any updates until at least next week. Look out LA, here I come!
Yesterday I took a preliminary bone marrow biopsy because my platelet level dipped from last week. The doctor said there is no reason to be alarmed, but if something is wrong, she wants to have a plan ready for when I return. It could just be that my platelets spiked at a high number and are now “normalizing” to a stable place.
Well, that’s about it. I’ve got to get ready to go. See you LA folks soon!
May 6, 2008
Great news! I officially don’t have the bad cell trisomy-8...at least for the next four weeks. Here’s the story:
Today, we went into the BMT clinic for my weekly follow-up visit. We had a list of questions to ask about the cord blood infusion. The doctor, however, came in and told us that the biopsy results from the second lab show no signs at all of trisomy-8. In three weeks, we will take another biopsy and see what the results are from that. Needless to say, the cord blood transplant is now postponed until we get more information. They have found two batches of cord blood that are a match for me, and have put them “on hold” in the event that the trisomy-8 shows up again.
Even better is that The Grand Tour is still on. As soon as I post this, we’ll be buying plane tickets. I hope to see you all soon!
May 4, 2008
Ladies and Gentlemen:
We are proud to announce The Grand Tour! My doctor suggested that we get away for awhile since the cord blood infusion won’t take place for six weeks or so. Chris and I put our heads together and decided that rather than seeing the Grand Canyon, going to Las Vegas, or visiting Route 66, it would be more fun to spend time with our family and friends. Here’s the itinerary:
May 9-12: Billie and Ian will come to Forest Hills for a visit
May 12: Chris departs for a PBS meeting in Palm Springs
May 14: I leave for Thibodaux
May 18: Chris returns from Palm Springs and joins me in Thibodaux
May 22: We return to NYC
May 24-26: We head to Rochester
June 6-8: We head to Chicago
So, that’s the plan! This is the itinerary as of now. The only thing that might throw a wrench in the plan is if my blood count changes for the negative. But it won’t, and we’re going to have a great time.
If you live in any of the areas we’re visiting and want to make specific plans, let us know! And if you don’t live in any of the areas we’re visiting, we’ll still be thinking about you.
UPDATED: April 29, 2008
Howdy folks! Not much good news today, I’m afraid. The results are back from my bone marrow biopsy and it looks as if there are still trisomy-eight abnormal genes on a molecular level. I don’t have as many as I did back in February, but they are still there.
There is some good news—I am 100% donor marrow, my blood counts are excellent, the fluid in my central nervous system is clean, and my marrow shows no sign of leukemia. The problem, of course, is that the trisomy-eight, if left alone, will definitely grow and trigger leukemia.
The doctors are proposing that we do another transplant. This one would not involve Heiner’s marrow, or anyone’s bone marrow. They suspect that there is now a level of symbiosis between Heiner’s marrow and the bad cells...put simply, his bone marrow doesn’t have the oomph it needs to conquer the leukemic cells. This time around, they want to use cord blood—umbilical cord cells donated by a mother after giving birth. The bad cells are persistent, but not aggressive and fast-moving. This will give them time to find the cord blood and plan my treatment. In essence, the new transplant will not take place for another six weeks to two months. In the meantime, they will continue to monitor my blood weekly to make sure nothing is going wrong.
This transplant should be easier than my original transplant, but there are many extreme risks involved. My body, for example, is practically overflowing with toxins from chemo, and now we’ll be adding more. I hope, though, that the benefits potentially outweigh the risks.
Since it will be quite some time before the actual transplant takes place, we’re weighing several travel options. Chris has to go to California on business for a week next month, so we’re going to try to figure out when we can go to Louisiana, Rochester, and any other fun places that might come up.
So, it will be a tough road ahead. If you haven’t already, please consider clicking on the link to the left to join the bone marrow registry. And if you know of anyone who is pregnant, encourage them to ask their doctor about donating cord blood.
CLARIFICATION: Hi everyone! I want to clarify what we’ve said about cord blood in the update. Many people who have read it believe that I need friends and family to find cord blood donations for my treatment. This isn’t the case. The doctors are sure that they will find something compatible with me in the cord blood bank. Cord blood doesn’t have to be an exact match because it works in a different way than a bone marrow transplant. What I wanted to point out, though, is that donating cord blood saves lives. If cord blood isn’t donated, it is simply thrown away.
Here is a link for potential cord blood donors: http://www.cryo-intl.com/enroll/donating/. There is no charge for donating, but some doctors may try to charge for the procedure. I’m sure they can be talked out of it. After all, if you have the chance to save a life, why not do it? So get your pregnant friends to talk to their doctors today!
April 23, 2008
Hello everyone! At my appointment yesterday, my blood counts looked great, they took a bone marrow biopsy, and my head port was tapped. Tapped as in “tapping a keg,” not “tapping on the window.” It will be a few weeks before we get any information.
The BMT doctors have an entirely new office. It’s basically in the same place that it was, but it now extends into an area that was the cafeteria. It’s really nice, but the doctors and nurses seem to be having problems figuring out where everything is kept.
Well, that’s about it. I hope all is well with everyone!
April 15, 2008
When I left the hospital in January, one of the nurses, commenting on my uneventful stay, told me to “stay boring.” This week, I continued to stay boring. According to the doctor today, my blood count is in line with where it should be, plus I’m feeling fine. Well, except for allergies, but even people fighting cancer can have allergies. Unfortunately.
For those of you who don’t know, my mom went home last Sunday. She returned to work yesterday and says that the kids were really happy to see her.
We’ve been in the midst of Spring cleaning here, discovering things we’d forgotten we’d had under the dust and dirt. I used the shredder to dispose of almost three years of hospital and insurance papers. There was so much to get rid of that the shredder overheated three or four times, and I’m still not finished!
And that’s about it. Next week, I’ll have a biopsy done, then it will take a few weeks for the results to come in. Until then, I’ll try to stay boring!
April 9, 2008
Howdy gang! Yesterday was yet another uneventful visit to the BMT doctors. My blood counts are rising to where they need to be, and I’m even allowed to eat out, go to the movies, and go to the theatre...just in time for allergy season!
Did you know that 70,000 people aged 15-39 diagnosed with cancer every year, and that for over two decades there has been little or no improvement in survival for this age group? There is an organization trying to change this by supporting the approval of an Adolescent and Young Adult Cancer Bill of Rights. If you’d like to sign the petition to help get this passed, click here: http://www.seventyk.org/
And that’s about it for now. I’ll be back with more fun stuff later!
April 2, 2008
Hi all! This is just a quick update to let you know that yesterday’s BMT appointment was fine. My blood count is where they expect it to be (I’m still low on white blood cells, which means that I’m stuck in the apartment on a restricted diet for a while longer). We have to be on the lookout for fevers or rashes, but otherwise everything seems to be going well. We’ll be taking another bone marrow biopsy in three weeks.
And that’s it!
March 31, 2008
Hello folks! Sorry it has taken so long to put up a new update, but my desktop computer is now officially dead. I’ve been spending the past few days trying to get my brand new laptop in order. I have just about everything figured out...except getting Outlook to work with my Web email. I think I’ve had this problem before. Unfortunately, I think that I solved it last time through pure dumb luck. Oh well. I’ll keep trying!
I’ve been feeling fine—no fevers or rashes or anything. Chris has a cold, and we have our finger crossed that he won’t pass it along to me. Tomorrow we have our regular Tuesday afternoon appointment with the BMT doctors so that they can check my blood count.
To make up for not posting an update in a while, I’ve created a special treat using the new computer. Click here to see it!
March 24, 2008
Howdy all! I am at home, reeking of Campbell’s Tomato Soup (as you may recall, the preservative used to keep Heiner’s marrow fresh smells just like it). We got to the hospital at about 8:30, were met by a bitchy nurse, and got into the treatment room at about 10. I got fluids, a bunch of pre-meds, and got the last bag of Heiner’s cells at about 2:30. I spent most of the day sleeping, and only woke up to wolf down a package of breath mints when I was getting the last of his cells (in addition to smelling like tomato soup, I get the added bonus of my throat feeling like it’s covered with tomato-ey fur). I am feeling ok, just a bit tired. We have an appointment to go back next Tuesday, but, as you may remember, the last time we did this, I ended up in the hospital for three weeks. So we have to wait and watch and see if any GVHD or other problems crop up.
We’re keeping our fingers crossed and will of course keep you updated.
March 20, 2008
Howdy all! Yesterday’s transfusion of two bags of platelets was extremely uneventful. So uneventful that I basically slept through the entire thing. Ah, the joys of Benadryl as a pretreatment!
Amazingly enough, the transfusion took place in a part of the hospital I’d never been in before. Who knew such a thing existed? Mount Sinai is huge—you could get lost if you didn’t leave a breadcrumb trail.
And that’s it. Now we’re just waiting to go in Monday for my DLI of Heiner marrow!
March 18, 2008
Hello again! Today’s visit to the BMT clinic went as expected. My blood count is really low, so tomorrow I’m going back for two bags of platelets. Yummy!
As of now, we are still on for the DLI Monday.
We’ll keep you posted!
March 16, 2008
Hello friends! And enemies...grr. Just thought I’d be inclusive.
It has been an uneventful week. I woke up with a slight nosebleed Friday but no fever. It is probably just a combination of low blood counts and higher temps outside (yet no lowering of the building’s heat inside). The BMT doctors told me just to keep an eye on it, which is unusual since they normally get me to come in for things like itchy toes or excessive earwax.
Tuesday we’ll go in for another blood count. If all is well, the DLI will take place a week from tomorrow.
And that’s about it. May the luck o’ the Irish be on ye tomorrow!
March 11, 2008
Today we had an extremely short and uneventful appointment with Sunshine and Rainbows. We were back home in less than two hours...and that includes travel time. Last week’s doses of chemo have not done their dirty work quite yet, as all of my numbers are still perfect. They need to wait until the chemo has its full effect before they do anything else to me. They’ve decided that the boost of Heiner’s marrow will happen on Monday, March 24th. Now we just have to sit, wait, and hope nothing goes too funky with my dropping blood levels. I have to go back next week to get my blood checked again, but other than that it should be quiet for the rest of this week. Other than being pretty fatigued from all of the chemo, I am feeling fine.
We will keep you posted!
March 8, 2008
Hey kids! Yesterday’s final blast of chemo was relatively uneventful. First I received a dose of the old kind, then came the one made of Texas dirt. Appropriately enough, it came in a brown bag. The chemo itself was clear, but the outer bag made it look the color of a chocolaty caramel.
The day was extremely long. We arrived around 8:15 AM and departed around 5. I slept practically the entire time. I didn’t experience any side effects they said might accompany the new chemo, but we have to keep an eye out for the next few days just to make sure nothing develops.
I have a follow up appointment Tuesday to have my blood count checked. Then they’ll decide when to give me the last dose of frozen Heiner. It could be as early as next Friday.
I am feeling great. Even my persistent backache seems to be on vacation. With all of the chemo I received this week, I am absolutely exhausted. I’m talking wake up from one nap and wonder when I can take my next nap exhausted.
Speaking of, I’m off to nap!
March 6, 2008
Hello all! Day four of chemo, and all is well. We’ve been going to the clinic around 9 AM and getting home around 12 PM. So far, there have been no side effects. Now I sleep through the entire procedure and then come home and nap again until lunch. What a life!
Tomorrow we’re going in a little earlier because I’ll be getting two kinds of chemo—the usual kind and the kind made of Texas dirt. I’ll have to stay in the clinic for most of the day because they want to make sure that I don’t develop any adverse reactions, like fever, chills, or wildflowers sprouting from my head. It’ll be a fun day!
That’s about it. We’ll let you know how it goes tomorrow, especially if they strike oil or something.
March 3, 2008
Howdy all! The first day of chemo has passed without incident. According to the doctor, all of my numbers look great, which means it’s a good time to start hammering down all of my reds and whites. Today through Thursday, I’ll be getting an old, familiar chemo that I have had many times before and which I tolerate fairly well. On Friday, I am getting a new, secret weapon chemo that I’ve never had before (which, incidentally, is derived from dirt in Texas...and no, I’m not kidding). The doctor is hopeful that this new chemo will do the trick and get rid of those pesky abnormal cells.
They will then wait a week or two before giving me the boost of Heiner. My numbers will have to first bottom out (as a result of the chemo), and then come back up before the boost. The boost will bring us to the bottom of the barrel of Heiner’s marrow...hopefully we won’t need any more, because he’d have to donate again.
My mom came back on Saturday and has settled in (yet again) to life in the Big City. It’s good to have her here to help out and support through yet another round of treatment.
We will keep you posted. We are hoping for an easy week.
February 26, 2008
Hi all! So this afternoon, I got a call from Dr. Sunshine and Rainbows. The initial data from last week's biopsy has come in from two separate labs, and the results are not ideal.
I am back down to 95% donor marrow and 5% crappy Jonathan marrow (again), I’m showing the abnormal chromosomes (again), and they want to treat me aggressively (again). They have opted to give me a week of outpatient chemo (next week, Monday through Friday). Then, they will wait a week or two and then give me another boost of Heiner (also on an outpatient basis).
Sunshine and Rainbows is not happy, obviously, but she is hopeful that they can knock it out of me. They are considering giving me a shot of a new chemo called Mylotarg that I’ve never had before. Dr. Chris Czajka has done some preliminary reading about it online, and it sounds promising. We just need to hope that insurance will approve it quickly.
Once again, we will have to be on the lookout for post-chemo infections, and after the boost, we'll have watch for GVHD, and hoping I get some, but not too much.
It’s looking like my mom will be coming up to her second home soon to assist with my care and feeding.
As always, we’ll keep you posted.
February 20, 2008
Hi all! Things are going well here. I'm feeling fine. Yesterday I had an appointment at the BMT clinic to get a biopsy. The waiting room was extremely stuffy and was packed with people. This isn't uncommon on the Tuesday after a holiday because everyone who would have come on Monday gets rescheduled to Tuesday. It didn't help that one patient brought along five other family members.
We waited for what seemed like forever before being ushered into an exam room. When the doctor came in, we found out that they had forgotten that I was supposed to get a biopsy. She said my blood count looked great and that if we wanted to, we could wait to take the biopsy next week. My answer was no-I was mentally ready and wanted to get it over with. The biopsy was relatively pain free and I don't have much discomfort today.
We won't get any results for two or three weeks-they want to make sure that everything is correct this time-and I don't have to go back to the clinic for two weeks. Yay! Another doctor-free week!
We had a pair of welcome visitors this weekend-Billie and baby Ian. We had a good time singing Elvis songs, shopping at Ikea, and getting food on every surface possible.
That's about it from here. I'll post another update whenever we get any news.
February 13, 2008
Hi gang! Happy Valentine's Day (one day early)! There isn't much to report here. I am currently enjoying my first doctor-free week in months. Woo-hoo!
In light of the fact that I have no real news, here's a hair report. The hair on my head surprisingly didn't completely fall out this time around. It only thinned out. Still, I look like a mangy dog. It doesn't really bother me though. If I'm in a restaurant or something and I'm feeling hot, off comes the hat. My eyelashes and eyebrows REALLY thinned out. I sort of look like an alien when I'm wearing my hat. Alas, I still have to shave because not enough of my facial hair stopped growing.
And that's about it. This weekend Billie and baby Ian are coming for a visit. This will definitely test my energy level!
February 6, 2008
hello everyone. i'm whispering just in case you're still recovering from mardi gras. since our favorite cajun place closed last year, we ended up at a forest hills joint called mardi gras. it wasn't terrible, but it also wasn't the same. we'll look for a new place next year. we were sort of stuck with the forest hills option this year because we had to vote.
Yesterday I also had an appointment with the Bone Marrow Transplant team. My blood counts are great. They are so good, as a matter of fact, that I don't have to go back for another checkup for two weeks! When I go back, they will take a "60 day post transplant" biopsy which will hopefully confirm all of the good news we've gotten over the past few weeks.
It will still be at least two months before I can take the subway again, so I guess I'll continue to spend a lot of time around the apartment. More later.
February 1, 2008
Hi folks! Here I am, sitting in my living room, NOT getting a DLI. The doctors thought it was so strange that the tests came out 100% Heiner marrow but still showed 0.004% cruddy stuff, they had the lab rerun the test. A senior technician took a look, and didn't see any bad cells. That means that as of my last biopsy, I am 100% Heiner and have no bad cells! They also took a sample of my brain fluid Tuesday, and it, too, is absolutely clear.
In a few weeks, we'll take another biopsy just to recheck everything. From now on, they'll also send my marrow samples to two labs so that the readings can be double verified.
Needless to say, this is great news. My mom is heading home over the weekend, and hopefully things will get back to normal soon!
January 29, 2008
Hello everyone! Last week's news from the doctors that I have 100% Heiner marrow was determined by superficial tests, sort of like walking around a car and deciding that it looks okay before looking under the hood. A deeper analysis shows that I still have 0.004% bad cells. That's apparently two in five hundred. It's much, much lower than it was before the transplant, but we need to get it down to zero.
There are two options. The first is to wait a few more weeks and take another bone marrow biopsy. The trisomy-8 could be gone because I am no longer on immunosuppressants. As a matter of fact, the abnormal cells could be gone NOW. The other option is to be more aggressive and have another DLI, an outpatient infusion of Heiner's marrow to try knocking out whatever might still be lurking.
Being the impatient person that I am, I elected to have the DLI Friday. There will be no chemo or anything, just a dose of Heiner. Then, as usual, we will have to be on the lookout for GVHD, which is always the risk when injecting more foreign bone marrow.
The rest of the week will be busy as well. Tomorrow I have a doctor's appointment in the afternoon and we're seeing Jerry Springer: The Opera tomorrow night. Thursday the Geek Squad is coming back to finally fix (I hope) the desktop. Then Friday is the DLI. At least I can sleep through the DLI!
Well, that's about it. We'll keep you updated whenever we get any news.
January 23, 2008
Ladies and gentlemen...
Your attention, please...
As of last Tuesday, I now have 100% HEINER MARROW!
January 21, 2008
Hello all! Nothing much is going on here. I've been doing a lot of work from the office at home. We even went to the movies Saturday to see Cloverfield (not bad, but you can probably wait until it comes to DVD) and even went out to dinner. Yes, I've been set free, but still with strict limitations. No uncooked food, no subway, no crowded places.
Here's the lesson I've learned this past week-I cannot take Percocet. I used it for two nights to ease my shoulder/chest pain, but after spending both nights talking back to my dreams and/or hallucinations and walking into the closet after a middle-of-the-night bathroom run (luckily Chris was there to stop me before I stepped in), I decided that perhaps it would be better for my health and well being to simply take Tylenol.
Tomorrow I have an appointment with the surgeon to make sure that my chest wound is healing and with the BMT team to get my blood counts. We don't really expect any results from the biopsy, but we'll let you know what we find out!
January 16, 2008
I lost a little weight yesterday. Yep, the Hickman Catheter has finally been taken out of my chest and neck. Except for the fact that they told us to get there by noon and then informed us that my surgery wasn't until 5:45, everything went well. The surgery was painless-I was pretty much knocked out. The pain didn't really start until this morning, by which time all of those sweet, sweet drugs had left my system. I think this was partially due to the fact that the tape used to hold the gauze in place wasn't done correctly, so it tugged and pulled when I moved in certain ways.
Since that wasn't painful enough, I went in today to have a bone marrow biopsy. Remember that it could take up to three weeks to get complete results. While I was there, they changed the dressing on my Hickman wound, and said it looks fine. The new bandage doesn't hurt as much, and they've given me a prescription for Percocet to help with the rest of the pain. I guess now I'll move on to sleeping 20 hours a day instead of 13.
That's it for now. It feels like midnight, but it's only actually 4:54. No appointments for the rest of the week, except with Geek Squad, which will hopefully be fixing my desktop tomorrow afternoon. Keep your fingers crossed!
January 15, 2008
Hello! Today I was scheduled to get a bone marrow biopsy, but it's been postponed until tomorrow because this afternoon I'm having my blood catheter removed! I can't wait to have it taken out. It just hangs there out of my chest, it's achy when I sleep, and it requires too much care. Plus they easily become infected.
My desktop computer is still dead, but never fear! The Geek Squad is on its way! They'll be here Thursday to check it out and hopefully fix it.
Well, it's time for me to get dressed since we'll be leaving for the hospital in about an hour. More later...
January 10, 2008
Hi guys! Sorry I haven't written in a couple of days. I've been busy doing some work from home...not to mention the fact that I have NO short term memory. I keep telling myself "Do the update" but then end up doing something else.
Hi guys! Sorry I haven't written in a couple of days. I've been busy doing some work from home...not to mention the fact that I have NO short term memory. I keep telling myself "Do the update" but then end up doing something else.
...
...
Tuesday's appointment with the BMT team went well. My blood count is moving in the right direction, and nothing else seems amiss. Next Tuesday I'll have a bone marrow biopsy done. It will take several weeks before we have any real results. If any of my nasty cells show up, I'll probably get more frozen Heiner marrow.
Today I had a CT scan-as usual, the CT scan department was running an hour behind-and an appointment with the neurosurgeon. She looked at the CT scan and says that there are no signs of the tumors she treated this past summer. She showed us the actual scans from August and today, and the comparison was stunning. In August, the tumor at the front left of my head was a little smaller than a dime. The one at the back of my head was about the size of a quarter. Looking through the slides (the CT scan gathers images in slices/layers), we were amazed by the difference.
Well, that's about it. More later...
January 7, 2008
Howdy everyone! After writing yesterday's update, I wondered what I would write about today. Nothing's changed! Then my email binged. It was from Heiner. Here is the text from his email:
Hi Jonathan,
First of all, I wish you a nice, and above all, healthy new year. I hope your health problems have proved to be false, and you can have the year 2008 is concerned.
How's it going at the moment, what did the investigation with you? I press you the thumbs that everything goes to your satisfaction. Otherwise, I am of course you repeatedly for a donation available. We want to look to see whether we share your illness is not combat.
I have long reported with you, I have in recent times a lot of work.
As you know yes, I am working with the police, we have some new tasks to do. As our politicians can always something new ideas.
What good is that we have a new uniform Hesse. We are now in a new, blue dress on patrol. Next time I am in the service, I will a photo of me, and you send.
Until then I wish you all good luck.
Your friend
Heiner
As I'm sure you can tell, online translators aren't exactly...literate. I put his German text into another translator and got the following:
first once I wish you a nice, and above all the healthy new Year. I hope, your health problems do not have themselves proves to be true, and you can enjoy 2008 in full trains.
How does it go having yielded you at present, what the investigations with you? I press you the thumbs that all passes to your contentment. Otherwise I am available you naturally again and again for a contribution. We want to see yet once whether we cannot fight jointly your illness.
I did not report myself long with you, I worked recently very much.
How you know yes, I work at the police, we got some new tasks in addition. How everywhere our politicians can be occurred always something new.
What is good, we got in Hesse a new uniform. We go would rove now in more newly, blue clothing on. If I am the next time in the service, I will make send a photo of me, and you.
Until there, I wish you all all goods.
Your friend Heiner
Still not perfect, but it does clarify a few things. Except for that part about being "in full trains."
So, Heiner works for the police in Hesse, Germany, we will "fight jointly [my] illness," and he's totally willing to give more marrow if necessary.
Well, that's enough typing for me (and reading for your) for one day. Tomorrow we visit the BMT clinic and we'll let you know what we find out.
January 6, 2008
Hi folks! Sorry we haven't been able to post an update for the past few days, but my desktop died Friday. I've finally figured out how to force the laptop to make changes, so here we are, back up and running!
My appointment Friday went really well. My blood count is going up and up. This week I have at least four appointments-the BMT clinic Tuesday, a follow-up appointment later in the week, and an MRI of my head Thursday followed by a visit to the doctor who performed the stereotactic surgery. Plus, they want to remove my blood catheter this week, which will require outpatient surgery.
In other news, my hair is starting to fall out. We preemptively buzzed it my second day in the hospital, but it had plenty of time to grow back. As usual, this has had no effect on my nose hair, except to make it longer and stick straight out of my nose. Ah, cancer-it does such wonderful things to the body!
You might have noticed that there is a new link on the left of the screen for anyone wishing to learn more about becoming part of the national bone marrow database. All you have to do is sign up, take a mouth swab test, and you're done! I think there may be a charge to get registered, but just remember that if Heiner hadn't taken the test, I wouldn't be here right now.
Well, that's it for now. Hope all is well!
January 2, 2008
I'm baaaaack! Home that is. Hi gang! Jonathan here, in my own apartment. I got sprung from the slammer late this afternoon. I'm tired but otherwise feeling great. With my blood count up, the doctors didn't see any reason to keep me at Mount Sinai...other than the fact that I'm a perfect patient with a sparkling personality.
I'm going to the clinic twice a week so that blood can be taken and the doctors can look me over. Home health care will come in three times a week to clean my blood catheter.
It's great news that I'm home, but we're not out of the woods yet. The bone marrow is engrafting, but there is no way to tell right now how much of it is Heiner's good marrow and whether my nasty cells were wiped away. We have to wait a while before they can do a bone marrow biopsy.
Well, that's about it from here. We'll keep you updated!
January 1, 2008
Happy New Year to one and all. So sorry for the delay in posting the update, but things have been quite busy here.
Jonathan is continuing to do well. On Sunday, the doctors made the pronouncement that Heiner's marrow had engrafted, and is now building itself up in Jonathan's body, which, obviously, is great news. Jonathan still has no fevers, infections, or GVHD, but his white cells have built up to a level where people in the room with him don't even have to wear masks anymore. Unbelievably enough, he may be coming home from the hospital before the end of the week. He is in good spirits and feeling fairly well.
In a new and exciting turn of events, I am not feeling fairly well. At 3 am Sunday night/Monday morning, I woke up in the hospital feeling a bit queasy. That queasiness soon blossomed into a horrifically nasty stomach virus. Needless to say, I cleared out of the hospital in a hurry, and since yesterday morning I have been either asleep or. . . ejecting. . .at home. We'll leave it at that.
I basically haven't been this sick in about 10 years, which puts us in the ironic situation that Jonathan may be waiting to get out of the hospital until I am feeling better and have had a chance to hose down our apartment in bleach. The worst of my sickness has seemingly passed, but we will have to make sure that everything is under control before we bring Jonathan home.
We will keep you posted!
December 28, 2007
Another day, another platelet transfusion. Jonathan's counts are still low, and the doctors are assuring us that it's nothing to be concerned about. Still no fevers, infections, or other complications, which is great.
After finishing being stoned by Benadryl, he spent the day writing a review of "The IT Crowd." He is still fatigued, but in good spirits and not even too "hospital stir crazy" yet.
Gail is on the night shift at the hospital tonight, and I will take over tomorrow and Sunday, so there won't be any updates until New Year's Eve. Doom and Gloom wished us a "boring" weekend, and that's exactly what we're hoping for.
Enjoy the last weekend of 2007!
December 27, 2007
Jonathan had yet another good day again today. His counts, though still low, did not necessitate any transfusions today (which is great, because the Benadryl he has to take before he gets blood products kind of wipes him out for the day). He spent the day watching a British series on DVD called "The IT Crowd," which he says is quite funny. He also took a few naps, since he's feeling pretty fatigued.
Today, during her visit, Doom and Gloom remarked (sarcastically) that Jonathan is a "boring" patient so far this hospital stay. We all hope he stays that way.
One of the nurses is concerned that the area around his port (technically, it's not a port, but I forget the real name) might be getting red. They're doing a blood test to determine if he has an infection. But so far, no tell-tale fevers, so we're all dubious.
Tonight, we played the home version of "Are You Smarter Than a Fifth Grader?" that Gail purchased at Duane Reade. Apparently, neither Jonathan nor I are, since we never broke the $100,000 mark and were stumped by questions such as "Which is longer, the Great Barrier Reef, the Himalayas, or the Rocky Mountains?"
December 26, 2007
Hope everyone had a very merry Christmas day. As Jonathan said, we "made lemons out of lemonade," and had the best darn Christmas I think possible when spending it in the Bone Marrow Transplant Unit at Mt. Sinai Hospital.
Unbelievably enough, Jonathan is continuing to feel fairly well. He is somewhat fatigued, and his blood counts are still shot from the chemo. Over the past few days, he's had to receive transfusions and platelets several times, so if anyone is a blood donor, please make a deposit, wherever you are, to help replenish the stores he's using up. His main complaint is fatigue, but so far, so good. Compared to our other, much more harrowing hospital stays, he's doing well. I, of course, asked the doctors if we should be concerned that he's doing too well, and they looked at me like I'm crazy and assured me that everything is on track, which is the best Christmas present of all.
While it was a little weird to spend Christmas at the hospital, we genuinely did have a nice time. After Jonathan went to sleep on Monday, I further transformed the room, with miles of more lights and tinsel, which proceeded to blow the room around as a result of the air filters. The effect was kind of "silver Spanish moss in a thunderstorm." We had a steady parade of nurses and aides coming through the room to be slackjawed at the spectacle. We opened our little pile of gifts, and then Gail and I did assembly-line warm-up of all the food we made on Sunday. We all (including Jonathan) ate an enormous lunch, and then proceeded to gorge ourselves on candy, chocolate, cookies, popcorn, and a smorgasbord of other yuletide goodies.
The next big thing we're awaiting is engraftment of Heiner's bone marrow, which we should be seeing over the weekend or early next week. In the meantime, we hope he continues to feel as well and do as well as he's been doing over the coming days!
December 23, 2007
Well, merry "day-before-the night-before-Christmas." I am happy to report that Jonathan is still doing fine. No nausea, no vomiting, no fevers, no GVHD. Over the weekend, since his blood levels are still so low as a result of the chemo, he had to receive platelets and a blood transfusion, but other than that, he's been doing well. He's been watching "The Mod Squad," and last night, I made him watch both showings of "The Wizard of Oz" on TNT while we played Boggle. I'm taking that as a good omen.
Things are falling into place for a "very special" Christmas. We have all done a tiny (and I mean TINY) bit of shopping, so there will be some presents to open up Tuesday morning. The transplant room is decked out like Santaland meets Las Vegas. And today, Gail and I dashed back to Forest Hills to prepare a full-blown Christmas dinner that will reside in the fridge at the Transplant Living Center until the big day; then we'll heat it up in the microwave at the cancer ward. Sounds pathetic, but we are actually looking forward to it. We will have Christmas music from the iPod dock, plenty to eat, Christmas cards to open and look at, flashing lights, and gifts. I've even stashed away a few bottles of booze in the transplant unit, and I think Gail and I will polish them off. What more could we need?
Ronnie is spending the night at the hospital tonight, and I will go back to be with Jonathan for Christmas Eve night and Christmas night. Don't look for an update until Wednesday. However, if you'd like to call and send us your Christmas wishes, Jonathan's room number is (212) 241-1375. If he's sleeping or anything, we'll turn the phone off, so don't be afraid to call.
More so than gifts or trees or Hershey's kisses, Christmas is about having love and support and people who look after you. Jonathan, Gail, Ronnie and I would like to thank all of you for everything you've given us as we navigate this cancer roller coaster. In the midst of an awful and terrible situation, we are very, very lucky and blessed people.
"No man is a failure as long as he has friends."
Merry Christmas to all, and to all a good night!!!
December 20, 2007
Things remain stable here in NYC. As expected from the chemo, Jonathan's blood counts are plummeting. Today, he had to receive a bag of platelets, and most likely, tomorrow he will need a bag of blood to replenish his hemoglobin. This is totally "par for the course" and what the doctors are expecting. In fact, Doom and Gloom told me today that he's "doing great." He is still feeling fairly decent, and spent the day writing a full-length, detailed review of Season 9 of "Seinfeld." He is looking a little gray, but given the status of his internal chemistry, we can't complain.
Gail is on overnight duty tonight, and I will be on overnight duty tomorrow and Saturday, so don't look for an update until Sunday afternoon. We are trying to come up with a way to make the best of Christmas at Mt. Sinai. We're determined to make the day special somehow (how exactly we'll do that, we're not sure yet).
In other news, today was my birthday. My coworkers gave me a cupcake with 36 candles stuck into it, and managed to set an office garbage can on fire in the process. I love a little catastrophe on December 20. Many thanks to everyone who sent cards, emails, voicemails, and assorted greetings. It's a little surreal to be contemplating a birthday in the midst of all this. I even got a balloon-o-gram at the hospital, a bottle of champagne from some friends who came to visit (which was quickly polished off), and a really nice Christmas tree arrangement from my aunt when I arrived home. It is great to know that so many people are thinking of us.
So, look for an update Sunday, and keep hoping that Jonathan will be getting a well-deserved Christmas miracle next week.
December 19, 2007
Hi all. Another thankfully uneventful day. As expected, Jonathan's white count is dropping as a result of the chemo, so we have officially started the time when we have to wear masks when we're in the room with him. Hand-washing is of the utmost importance, and no one with the slightest sniffle is allowed to visit. His counts will continue to drop for the next several days before bottoming out.
He continues to feel fairly well. He is fatigued and having trouble concentrating, but he is doing all right. He is still eating well, which is great. We're hoping to get through this transplant without having to do IV nutrition.
Not much else to report. . .let's hope it stays like this!
December 18, 2007
I am happy to report that Jonathan received his second transplant this afternoon at about 2:45, and this evening he is comfortable, but tired, and looking forward to bed.
At about 2:30, the beer cooler and chafing dish appeared in the foyer or the BNT unit, and the nurses warmed up Heiner's frozen marrow. In preparation for the transplant, he was given Benadryl and some other drugs, which made him a little bit drunk and very sleepy. Maureen, one of the nurse practitioners on the floor who we have known since 2005, came in and gave Jonathan two turkey-baster sized syringes of marrow. The marrow looks--and, as a result of a preservative they put in it to keep it fresh-smells exactly like tomato soup. The room and Jonathan both soon strongly smelled of Campbell's Tomato Soup. After the boost in October, he smelled like tomato soup for about three days. Sorry if I ruined anyone's lunch.
He slept for a good chunk of the afternoon as a result of the pre-meds. He ate most of his dinner, and played a few rounds of Yahtzee. By the time Gail and I left at 8:15, he was his normal, albeit slightly groggy, self.
Now, we wait. We wait for the chemo to do its dirty work. We wait for Heiner's bone marrow to engraft. We wait for some (but not too much) GVHD to manifest. Keep saying prayers and sending Jonathan good vibes and positive energy. Like the Carpenters sang, "we've only just begun."
December 17, 2007
Well, tomorrow (Tuesday) is the big day. Sometime over the course of the day, they will wheel in the beer cooler with the frozen bag of Heiner's bone marrow, and warm it up in the chafing dish. Then, into Jonathan it goes.
The doctor on the floor this week (for those of you keeping tabs, "Sunshine and Rainbows" is off, and "Doom and Gloom" is on), is very impressed that Jonathan came through the chemo so well. All systems are go for the transplant.
He still feels fairly well. He was a little more fatigued today, but still managed to watch "Seinfeld" Season 9 and work on his review.
After the transplant tomorrow, his body chemistry is going to be in a state of flux and chaos. The chemo will be working to clean out his existing white cells (both the good Heiner cells and the crappy, evil Jonathan cells), the transplanted cells will be moving "into position," and his counts will be dropping. Soon, we will most likely be donning masks and robes and gloves when we're in the room with him.
We will be on the lookout for quite a lot over the next few days. First of all, the new cells have to essentially re-boot Jonathan's bone marrow, and start reproducing (the technical term is "engraft"). Second, the risk of infection when his white cell count is so low is very high. Third, there is a risk-yet again-of graft-versus-host disease (GVHD). As a reminder, GVHD occurs when the donor's immune system attacks the transplant recipient's body. The trick is that the doctors want some GVHD, because it shows the marrow is aggressive (and hopefully having what's known as a "graft vs. leukemia effect," and wiping out Jonathan's crappy, leukemia-prone cells). However, too much GVHD can be extremely dangerous. A bout of mild GVHD (which will make him quite sick) would be good; severe GVHD could be very bad news.
As I said to some friends last month, GVHD reminds me of the movie "Poltergeist"-"Run to the light, Carol Anne! Run to it! We're waiting for you in the light! Hurry!. . . Now, STOP! DO NOT GO into the light! Don't even look at it!"
Anyway, that's your oncology lesson/movie trivia moment for the day. Please send Jonathan prayers, good vibes, and positive energy all day long, and let's all really thank the universe for our friend Heiner in Germany, whose selfless act two years ago has kept Jonathan with us, and who we are counting on for so much.
December 16, 2007
Greetings from a very windy and wet New York City. I am extremely pleased to report that the weekend passed without any sort of surprises or incidents. True to his iron constitution, and despite all he's been through, Jonathan finished up his fifth and last dose of chemo today without breaking a sweat. No fevers, no nausea, no vomiting. . .the covering doctor this weekend was quite surprised by how well he's feeling. He pretty much feels the same now as when we checked in last Monday.
He spent the weekend doing laps around the floor, writing a review for the latest DVD of "Lost," playing handheld Yahtzee, and visiting with a steady stream of friends. At his request, his transplant room is fully decked out for Christmas, with a two-foot high, fully-ornamented aluminum tree, strings of lights, and lots of tinsel garlands. The doctors say that we should charge admission. I told them they should see our house.
Despite our questionable weather this weekend, Ronnie's flight came in without a hitch. Gail and Ronnie are now checked in to the Transplant Living Center on 95th Street. Ronnie is spending the night with Jonathan tonight.
It is a blessing that he has managed to get through five straight days of chemo with basically no reaction. He is strong and his spirits are up. Tomorrow, he gets a day of rest. Tuesday, he will receive the transplant. Then, it will really be time to wait and worry.
December 13, 2007
Hi all. Another (thankfully) uneventful day. Jonathan received his second dose of chemo over the course of the day, and he seems to be tolerating it fairly well. By this evening, he was feeling a little tired. He is back up to quite a hefty amount of pills to take each day. I think we all kind of blocked out just how much medication he was on during the first transplant.
This will be the last update posted until this Sunday. Tomorrow, I am going to the hospital for the Friday-night-through-Sunday-afternoon shift, and I won't be home to make the update. This will give Gail a break, and enable her to prepare for her "move on up to the East Side": over the weekend she will be checking into the Transplant Living Center (where she stayed during the first go-round). Barring any weather problems, Jonathan's dad is arriving on Sunday. Gail and Ronnie will stay at the TLC, which is very close to the hospital and will spare them the long, late night subway rides.
Hopefully on Sunday I will not have anything too earthshattering to report!
December 12, 2007
Hi all. The first day of chemo has passed without incident. Only four more to go. So far, Jonathan is feeling fine. He had a mostly uneventful day, took a stroll around the hospital, and played some Yahtzee. He must be feeling fairly well, since he requested I bring in his laptop and some DVDs tomorrow. He also received some visitors, including our friend Kelly and her beau Steve, and my cousin Kerri and her beau Sam. It sure helps pass the day when visitors come (and there's no vomiting).
Tomorrow will bring more chemo. I ran into Jonathan's favorite doctor (who several of you know as "Dr. Sunshine and Rainbows") on the way into the hospital, and she and I had a long talk. Basically, she underscored to me a few things that made me feel a tiny bit better, including her assessment that Jonathan's leukemia is very slow-moving, which is obviously good. She also reminded me that there is simply no way to predict what lies ahead, and that two years ago they were doubtful that he was going to make it through the first transplant. I guess he proved them wrong and his trademark stubbornness is good for something. So the roller coaster ride continues, and we just need to wait and see.
December 11, 2007
Hi all. A long but successful day. We waited until about 4:00 this afternoon for them to come and collect Jonathan for the installation of his chemo port. This, of course, is another example of Mt. Sinai's commitment to "patient centered care": he hadn't had anything to eat or drink since last night. We whiled away the day playing "Boggle" and obsessed with our new hand-held "Yahtzee," purchased at the Thibodaux Wal-Mart.
He was in surgery (or rather, pre-medication, surgery, and recovery) for about two hours, and got back to his room at about 6:30. He was awake and alert and ate dinner, as well as two pieces of mashed, leftover Angel Food Cake. His spirits are still up and he seems determined.
Chemo begins tomorrow and will continue through Sunday. He is getting a slew of preventive medicine, in particular to protect his liver, which can get into trouble with the chemo. However, they've assured us that the side effects should be minimal for the time being (one of the chemos he's getting can cause temporary Alzheimer's-like symptoms in about two weeks). If all proceeds as planned, he will be getting the donor cells next Tuesday.
Well, I am off to bed. Gail is staying at the hospital tonight with Jonathan, and I am going to put in an appearance at work tomorrow.
December 10, 2007
Well, he's in. This morning, Gail, Jonathan, and I headed in to the hospital so that Jonathan could get a specialized heart test to determine if he can handle the chemo they're going to give him. After the test, we went out to lunch, and by the time we were done, they had a bed ready for him.
He is now checked in to Mt. Sinai, Floor 11 Center, Room 221. This room is an "official" bone marrow transplant room, but it is NOT a plastic bubble room (thankfully). It is a fairly good sized private room (with four walls and a door, even), and it has its own bathroom and sink, unlike the original transplant room. While Jonathan was settling in, I decorated the walls with dozens of photographs of family and friends.
Tomorrow morning, he will have the port installed in his chest, to enable them to hook him up to multiple IVs without destroying his veins. On Wednesday, he will start six days of chemo. Then, next week, he will get the blast of Heiner's bone marrow.
He is in good spirits and feeling fine. I'll keep you posted as the week proceeds.
December 9, 2007
Hi all. It's Chris writing, as I re-learn how to navigate and post to the Web site. Tvdvdreviews.com now resides on our home computer, so Jonathan won't be able to do updates himself for the next few weeks.
Gail, Jonathan, and I are back safe and sound in New York after our long weekend in Louisiana...and what a great weekend it was. We flew out Thursday afternoon and arrived at the New Orleans airport, which is a little spooky and empty. The bustling, busy, pre-Katrina airport is a lot less crowded now. Jonathan's dad and nephew picked us up and we headed to Thibodaux.
Then, we were off and running for the weekend. We saw many, many, many of Jonathan's neighbors, friends, and relatives-sister, brother-in-law, grandmother, aunts, uncles, cousins, second cousins, great aunts and uncles...it was the Cajun mafia. We went out to lunch with all of his former co-workers from the Financial Aid Office at Nicholls State University, who gave him a huge basket of gifts and showed up in thematic outfits. We toured around Thibodaux and the surrounding area, and drove through the swamp (where we encountered a decent-sized rattlesnake on the road). We saw all of the downtown Christmas decorations, which include an illuminated crawfish and a Santa sleigh getting pulled by alligators. We visited Wal-Mart about five times, laying in supplies for the coming weeks. We had an enormous seafood dinner at a Thibodaux restaurant, with 15 of Jonathan's family. We visited two beautiful plantations on the banks of the Mississippi with his friends Caroline and Colette (including one where they filmed Hush, Hush, Sweet Charlotte and Interview with a Vampire.) It was jam-packed and wonderful.
Best of all, Jonathan looked and felt better than he has in months. Whether it was the fantastic (and superabundant) food, the balmy (80+ degrees) air, or the closeness of loved ones, he had a wonderful time and got to see and do many things that he has been wishing to do again in the long years since he got sick. Neither he nor I will ever forget it. The fact that Friday was his birthday made it all the more meaningful.
On Saturday, there was a big barbecue at his mom and dad's house. Fifty-five hamburgers were downed by an army of Jonathan's family and friends. The support, encouragement, and love he received really touched both of us very much, and I was really bowled over by everyone's hospitality and warmth. It meant so much to Jonathan to get so much support from so many people.
When we arrived home, we received a message that he will actually be admitted to the hospital tomorrow (Monday). He has a test in the morning, and then he will hopefully be into a room by mid-afternoon. On Tuesday, he will be getting a port installed in his chest, so that they can easily hook him up to multiple IVs. Sometime later this week, he will start the five days of continuous chemotherapy to get him ready for the second transplant.
The road ahead is going to be long and tough, but Jonathan is ready and happy with his decision. Please keep your prayers and good vibes coming our way. We will take any Christmas wishes and miracles you can send us, and we will do our best to keep you posted as things develop.
December 5, 2007
Well, at least we had a happy Thanksgiving! Yesterday we got some pretty bad news. The biopsy that was taken last week shows that I am only 95% donor and that my crummy marrow is producing bad cells at an accelerated rate. This leaves us with four options:
1. Receive another bone marrow transplant using frozen leftovers from Heiner. This time around there would be no radiation and a chemotherapy treatment that is totally new to me. I would go into the hospital this coming Tuesday and stay in for 3 or 4 weeks. The risks are great-Graft vs. Host Disease, infections, etc.-and the success rate is on the low side (50%).
2. Seek a second opinion.
3. Try to get into a clinical trial for a new medication.
4. Do nothing.
Fun stuff! After the appointment, I got together for a nice dinner with my mom, Chris, Mickey (my friend and boss), and our pal Nicole Roberts. Some of us stuffed our faces, some of us slugged down liquor, and all of us endlessly chewed over the possibilities.
After sleeping on it, I've come to a decision. We've come too far and down too hard a road to give up now, so I have to get the transplant. I don't want to, but I have to. Even if there is only the slightest chance it might succeed, we need to try. The alternate-doing nothing-means sure death (on what schedule, we don't know).
We briefly considered getting a second opinion but I nixed that idea. Sure, it may confirm that the second transplant really is the only viable option, but if it said not to bother trying, then that would muddy the waters for me.
The whole thing we keep coming back to in our conversations is quality of life. I guess I'm taking the gamble that by getting the transplant, I may have low quality of life for several months but at least have the hope of getting better. Without treatment, I could just do whatever I want to, but at the same time death would be hovering over me the entire time.
In good news, we have decided to make a quick trip to LA this weekend. We'll be there Thursday evening, Friday, and Saturday, leaving Sunday morning so that we can prep for my hospital stay. It should be a fun escape.
We'll give you more info as we get it!
November 30, 2007
It's hard to believe that November is finally coming to a close. Seems like just yesterday I was watching Neil Sedaka and being admitted to the hospital. Fun!
Not much to report today. Yesterday we went in to the see the surgeon who performed my stereotactic "halo" surgery, and she says that the MRI given to me while in the hospital looks perfect. I'm going to get a follow-up MRI in January just to make sure.
And that's about it! I'm trying to keep myself busy while simultaneously trying to nurse my aching back. So far, I've been about half successful. It's looking up, though! Hope all is well with you guys!
November 28, 2007
Howdy! Here's our update for the week. Yesterday we went to the doctor and found out the results of the bone marrow biopsy that was taken while I was in the hospital. That test showed that I am 100% donor-thanks to Heiner-but wackily enough another test still shows the presence of some of my own genetic abnormality. Just to be safe, the doctors took ANOTHER biopsy (between that and my herniated disc, I don't think I'll be able to sit, stand, or lie down for several weeks). This time the sample will be sent to two different labs, just to keep things interesting.
Otherwise, all of my blood counts are good and normal. My appetite is steadily improving (although it has a long way to go), I'm needing less rest (peak was about 13 hours a day), and I'm trying to lift my spirits. I have to say, as we approach the three year mark of my initial diagnosis, it becomes harder to remain chipper. But dammit, we came this far, we can see it through!
November 21, 2007
Greetings from Forest Hills! Yep, on Monday Mount Sinai gave me a reprieve and sent me home. Just in time, too-I was really going stir crazy. For those of you who don't know the story, here it is.
On Monday, October 29, I noticed that I had a slight fever. I was staying home that day recovering from my DLI and was talking to Chris on the phone when we discovered the fever. We called the BMT doctors, and they insisted that I go to the hospital immediately. I met Chris there around 2pm. By the time they were ready to admit me (after 7), I didn't even have a fever anymore.
Thus began a two and a half week long odyssey of aches, pains, mysterious fevers, biopsies, bouts of graft vs. host disease, stomach upset, lower back pain, mental confusion, really bad hospital food, and every single test my insurance company would approve. The long and the short of it is that the boost of donor cells I received in late October combined with the chemo I received earlier that month gave my immune system a one-two punch and I was down for the count. The biggest problem was that I had some sort of infection in my system, as evidenced by fevers that would come and go every few days. The doctors had a lot of theories as to what was going on, but they never actually came to a definite conclusion.
On the plus side, the doctors were very encouraged by the fact that I had a touch of GVHD of the skin. This showed them that Heiner's cells were attacking my body a bit. The hope is that, during the attack, they ate up any of the cells with abnormal chromosomes and pushed me back to being 99 or 100 percent Heiner bone marrow and less crappy Jonathan marrow.
In the middle of all this, Chris' father had a very unexpected triple bypass heart surgery. It made for a few chaotic and scary days, but his dad came through the surgery with flying colors and is well on the road to recovery.
My mom and dad were here when Chris had to sudden leave to take care of his father. My dad has now returned to Louisiana and my mom is staying for a little while longer to help out with my recovery.
Physically and mentally, I am awfully tired and worn down. I think I also have a bit of shellshock after being in the hospital getting tortured for so long. It is very good to be home for Thanksgiving, and we sure have a lot to be thankful for this year. Have a great holiday!
October 27, 2007
Howdy all! Yesterday we went in for my DLI. We arrived at Mount Sinai at 9am. Our first stop was the lab where the technicians took several blood samples. We were then escorted into a private room in the BMT clinic. I was hooked up to an IV of fluids and told that it would take some time for my DLI to begin. I sat in the room with Chris and we watched Today (which apparently runs for 10 hours a day now) and the new, Bob Barker-less The Price is Right. Our friend Kelly joined us at one point, bringing me a much-needed package of cough drops. Right after the Showcase, the doctor came in to examine me and to let us know that the DLI would begin at 1pm.
Around 1, the nurses added pre-treatment drugs into my IV, including Benadryl. At 1:15 or so, an attendant wheeled in a cart that included a beer cooler and something that looked like a chafing dish you'd see at a wedding. When the doctor was ready, the attendant pulled the marrow from the cooler. It was in a flat, metallic container that sort of looked like an oversized cigarette case. She placed it in the chafing dish until it warmed up to the correct temperature.
It didn't take long-about ten minutes. They opened the metallic case and pulled out what looked like a bag of tomato soup. Together, they emptied it into a giant syringe. The doctor then slowly inject the marrow into my IV over ten minutes.
I have to say it was really strange. My throat began to tingle and I had a nasty, chemical taste in my mouth. Apparently, this was the preservative used to keep the marrow nice and fresh.
We also found out that my white blood count is zero. White blood cells are the ones that fight off infections and illnesses. This helps to explain why I can't seem to shake my cold.
We had tickets for a concert that I bought last month. The doctors said it would be okay to go as long as I wore a mask. So, I put on a mask and we headed to Lincoln Center to see "Neil Sedaka: 50 Years of Hits." The first half of the concert featured guest stars singing songs that Neil Sedaka wrote and that in many cases they first sang. The guests included The Captain & Tennille ("Love Will Keep Us Together"), Clay Aiken, Connie Frances ("Where the Boys Are"), Dion, Natalie Cole, and Lou Christie. In the second half, Sedaka took the stage to sing his own hits ("Calendar Girl," "Laughter in the Rain," "I'm Living Right Next Door to and Angel," "Happy Birthday Sweet Sixteen") and to sing duets with the other artists. We had a great time and were-needless to say-exhausted by the end of the show. It was raining when we left the theater, and there were no cabs to be found, so I put on another mask and headed to the subway. We finally got home around 11:30.
So, yesterday was a big day. Today was much less eventful. It started off rainy, and I decided that it would be best if I didn't leave the apartment. I didn't even bother to change out of my pajamas.
I'm still extremely tired and have an occasional coughing fit, but hopefully the medication given to me by the BMT doctors will help to ease that. I have to go back in Tuesday to get my blood numbers check and possibly to get more brain chemo, depending on my numbers.
Well, that's about it. Let me get back to loafing around in my pj's!
October 23, 2007
Hello all! Today I had a follow up appointment with the BMT team and found out some disappointing news. The biopsy that was taken two weeks ago shows that I now have 95% donor marrow (yeah Heiner!) and 5% old crummy Jonathan marrow. This is a step backward-the biopsy taken less than a month before that showed 98% Heiner and 2% junky jonathan.
Because of this, the doctors don't even want to wait to see if the chemo worked. Instead, Friday I'm going to go in and have donor lymphocyte infusion (DLI) using some of Heiner's frozen marrow left over from the transplant. This is how WebMD describes DLI:
Donor lymphocyte infusion (DLI) is a cancer treatment that may be used after stem cell transplant. Lymphocytes (a type of white blood cell) from the stem cell transplant donor are removed from the donor's blood and may be frozen for storage. The donor's lymphocytes are thawed if they were frozen and then given to the patient through one or more infusions. The lymphocytes see the patient's cancer cells as not belonging to the body and attack them.
It is an outpatient procedure, and we'll have to be on the lookout for any adverse reactions. The doctors are hoping that I'll at least get a little graft vs. host disease because it will mean that Heiner's marrow is doing its job and attacking all of the bad cells in my body. It will probably take a few weeks for any symptoms to show up, though. We have concert tickets for Friday night and the doctors have even said that it would be okay to go.
I'm still a little tired and I have a cold that I can't shake-probably because my immune system is off. Otherwise, things here are fine. We'll keep you updated as we get more news!
October 15, 2007
Howdy everyone! Today is my last day of the current round of full body chemo. Receiving more in the future hasn't been ruled out, but this will end it for at least a few weeks. So far, there have been no side effects. My appetite is still good, what little hair I have is still on my head, and all is well. Except that I have a cold. Tomorrow we start up with brain chemo again.
This past Friday marked the two year anniversary since my transplant. Time flies!
My mom headed back to LA Saturday. It was nice to have her here while traveling back and forth to the hospital. Even though it turned out to be uneventful, there was really no way to be sure until we were in the middle of it.
Well, let me run. It's time to get this day started!
October 9, 2007
Hello! Yesterday was officially supposed to be the start of my chemo, but it actually got postponed until today. The blood test I took before my appointment showed a dip in my platelet level, so they wanted to take another bone marrow biopsy before administering any chemo. Basically, they wanted to make sure I was still in remission. A quick overnight reading shows no leukemia, so I am officially still in remission. The falling platelet level has now been attributed to a delayed reaction from the radiation treatment.
With that info in hand, we were able to take the first round of chemo today. So far, so good-no side effects as of yet. Now the chemo will end Monday...and Tuesday I'll get more chemo to the brain. Mmmm...chemicals!
My mom arrived Saturday and has been going back and forth to the hospital with me. We spent the weekend going out for a few GREAT meals and seeing the Broadway revival of A Chorus Line. I figured if I had to get pumped full of chemicals, I'd have fun first.
Well, that's about it for now. We'll post more news as we get it!
October 3, 2007
Hello all. Bad news I'm afraid. Yesterday I received the result of my latest bone marrow biopsy and it still shows a level of the genetic abnormality that marks my leukemia. I'm still supposedly at 100% donor marrow, but because this is the second test that has come back showing the abnormality, the doctors don't feel that they can simply write it off as a fluke.
Starting Monday I will receive a series of five full body chemo treatments over the course of five days. Side effects should be minimal, and the goal is to keep as much of the donor marrow intact as possible. After the treatments, they will wait a week or two, redo the bone marrow test, and formulate a plan from there.
My mom is off of work next week, so she has volunteered to come to the city and take me back and forth to my appointments for the week. It will be completely outpatient.
So, unfortunately, it looks as if none of this is over quite yet. I am thrilled, though, that we have again heard from my donor:
Hi Jonathan
it´s wunderful to hear anything from you.
now it´s half past three in the Afternonn and I m on work. In Germany today we have a national holiday, it calls Tag der deutschen Einheit(Day of the germanunity) But I must work.
In two hours I must play Handball in a Competition.
Tomorrow I work in Night-Shift and after them on friday I will go to the German Bierfest (Oktoberfest) to munich.
There lives my Brother and Sister.
In next time I will write you a long E-Mail with my personality Details.
have a nice time
I still haven't addressed the fact that I'm not in remission anymore with him, but I figure we'll just have to figure out how to do that as we go along.
Thanks once again for your love and support. This is another setback, but what can we do but fight, fight, FIGHT!!!
October 1, 2007
We have contact! This morning I opened my email to find one with the following subject matter: "Hello from Germany." Yep, we finally have a name to go with my donor: Heiner Lenkering.
Here is what he wrote (with one minor edit for language):
Hallo Jonathan,
this is a Mail from Germany.
I hope your adress is right. I´m the Person who spends blood for you. Oh sh!t, my english writng is terrible. So I try first your E-Mail-adress.
In future I think I wil write in German, so you can learn my language, and it´s easy for me to write you something about my live.
Many greatings
Heiner
Here is my reply:
Hi Heiner--
This is Jonathan Boudreaux. You have found me. . .I am the person who received your bone marrow. I cannot express how very grateful I am to you. My family and friends are also so grateful for your unselfish and heroic act.
I don't speak German, but I have some friends who do, and they have translated this email for me. I am in the process of writing a longer email to you, which I will also get someone to translate. I hope that works for you.
I will send another email soon.
Jonathan
Just thought I'd share the exciting news! Everyone send out kind thoughts to Heiner!
September 28, 2007
Howdy folks! Yesterday's procedure took place as planned. We signed in around 6 AM, filled out some papers, and were soon escorted to an exam room where I was told to strip down and put on a paper gown. They really know how to make you feel at home! After a short wait, I was put onto a gurney and wheeled up to the O.R. I was completely knocked out for both the halo installation and the CT scan. The first thing I remember is being wheeled to another exam room where we would have to spend the day.
The halo wasn't overly heavy, but it was extremely awkward. Because it extended about three inches from my head, it was difficult to get comfortable. I finally figured out that shoving a pillow behind my back, it gave me enough clearance to sit without putting pressure on the back of the halo. The halo also lined up perfectly with my mouth. There was a gap, so I was able to eat small items like crackers and drink using a straw, but I kept forgetting I had it on and usually hit the straw on the halo.
Luckily, the radiation stage took place a little earlier than we originally thought. I was in the radiation department a little after 4. Having my head screwed to the table was very weird and uncomfortable, as was the part where they unscrewed the halo from my head without any sort of anesthesia or pain killers. It's over now, though, and hopefully will have been a success. I have several follow up tests and appointments that will take place over the next few months.
As recommended by the doctors, I stayed home today to recover. I have four little wounds-two on my forehead and two on the back of my head. They are about the size of a pencil point, except for one on my forehead that's a little larger. The wounds should heal over the next couple of weeks and supposedly will not scar. I haven't had any pain and slept really well last night-eleven hours!
Well, that's it for now. I hope all is well with every one!
September 26, 2007
Hello! Sorry it has taken me so long to post another update. It's just proof that my short term memory isn't what it used to be.
My insurance company has finally approved the targeted brain radiation and I'm scheduled to have it done tomorrow (Thursday). The schedule is a bit grueling. I have to be at the hospital between 6 and 6:30 AM. After I'm signed in, I'll be taken to surgery where a metal halo will be screwed into my head. Next, they'll take a CT scan of my head to get an idea of where the lesions are in relation to the metal halo. Afterwards, I'll be placed in a private waiting room where I'll stay while various doctors and physicists figure out the best way to focus the radiation on the lesions. This part will take hours, and I'll be wearing the metal halo the entire time. Unfortunately, because of where the halo will be placed, I probably won't be able to wear my glasses which will limit what I'll be able to do during the wait time. In the late afternoon/early evening, they'll bring me into the radiation therapy department, screw the halo to the table, and do the procedure. That part should take only 40 minutes. Then the halo gets taken off and I get to go home. Fun!
Still no results from last week's biopsy. We'll keep you posted. If I can remember!
September 18, 2007
Howdy folks! Today I went in and had a bone marrow biopsy. They want to be really conservative and make sure there's nothing lurking in my marrow. My blood numbers are perfect, though, so we're hoping we won't find anything wrong.
Yesterday I had been scheduled to get targeted radiation to the lesions/scars in my brain. It turns out that it's a complicated process involving the attachment of a metal halo to my head, taking an MRI, comparing it with previous MRIs and scans, and then coming up with a treatment plan that will hit only the affected spots on my brain. The entire process will take up to 12 hours. My insurance company hasn't approved it yet, so the doctor will have to file an appeal. She hopes that I'll be able to get the procedure done next Wednesday.
In the meantime, I don't have any chemo this week! They are switching to an every-other-week schedule. If I get radiation next week, then we might skip chemo again. We don't want to fry my brain any more than it's already been fried!
September 11, 2007
Hello everyone! More chemo today-not the really bad kind, luckily. The doctors say that they are considering cutting back on the chemo to possibly once a week. They'll decide in the next few days. They also want to do another bone marrow biopsy next week just to make sure that everything is okay.
They are now strongly thinking about giving me highly targeted radiation treatments to the locations where the lesions were to insure that any lurking leukemia is eliminated. I'm going in tomorrow to the radiologist for consultation. Apparently, though, they don't want to give me any radiation until they have the results from the biopsy.
Well, that's about it. I hope all is well with everyone!
September 5, 2007
September? September! Where exactly did the summer go? Oh well.
Yesterday I had an appointment with the pulmonary doctor. More good news! According to my latest round of breathing tests, my breathing has actually improved for the first time in months. She's not sure why, but I did much better yesterday than I did in June, so the scans they considered giving me will be indefinitely postponed.
Well, let me head off to work. It's my first day back since the Labor Day holiday, so it promises to be a busy one. Hope all is well!
August 26, 2007
Great news! According to the doctors, my MRI shows that the lesions have shrunk and are probably just scar tissue now. The PET scan shows that they are totally inactive. Needless to say, we're thrilled by this great news. Chemo will continue to get rid of anything that might be lurking. The doctors are still trying to decide whether or not they want to give me another small shot of radiation just to make sure that everything is gone lesion-wise, but they are having trouble reaching a consensus because they are all on vacation.
Speaking of vacation, we spent the weekend down the Jersey shore in Ocean Grove at Chris' boss Marsha's beach house. We had a great time and went to see Johnny Mathis in concert. He was great-he looks and sounds exactly like he did years ago.
Well, that's it for now. Thanks for all your positive thoughts-they've obviously been doing some good!
August 22, 2007
Hello everyone! Not much of an update today. Still no results from the tests I took on Friday. It seems that 3/4 of the doctors at Mt. Sinai are on vacation. We're hoping to have some info by the end of the week.
We do, however, have results of my bone marrow biopsy from last week. I am now 100% donor, which is great news, and means that there is no leukemia in my bone marrow.
And that's it. Told you it wasn't much of an update! We'll get more info to you as we get it.
August 19, 2007
Hi all! Friday I spent the better part of twelve hours at Mt. Sinai getting two simple tests: a MRI and a PET scan. The goal of these two tests is so that the doctors see what is going on with the lesions on my brain. We've been told that since it takes a few months for the radiation treatments to have their full effect, but the purpose of taking these tests now is to see if there's anything new happening.
The preliminary results of my biopsy from last week looked good. We should be getting full results this week. On Tuesday, we will be heading to the doctor again for another dose of chemo, and in theory, some results from the MRI and PET scan. We will keep you updated as we get more info.
In other news, I've started using a product called "Bald Guyz Moisturizing Gel" on my bald pate. Theoretically, it's supposed to help with my dry scalp. It hasn't really done much so far, but it is rather cooling, and the name is so stupid I feel like I should continue using it.
That's about it. Stay tuned for more!
August 12, 2007
Hi folks! When I went in for my doctor's appointment Friday, my blood count was so close to normal they decided to only do a partial biopsy. And yes, they're just as painful as the regular kind. We should have the results in about a week. My brain fluid remains clear.
This week is filled to the brim with appointments. Tuesday I see the neurologist and get more chemo. Friday I see the radiologist for a follow-up appointment, plus I have a PET scan and an MRI scheduled. They want to see whether or not the radiation and chemo have helped to shrink or get rid of the lesions on my brain. What fun!
Well, that's all for now. I'm off to bed. I want to be well rested for work!
August 8, 2007
Greetings from calamity-prone New York! Today, the day started off with a gigantic thunderstorm, and a tornado touched down about 9 miles from our house. The entire subway system was flooded, so I opted to stay home for the day.
Yesterday I had my dose of chemo. Officially, I am now down to one dose of chemo per week. The last three tests of CNS fluid have not shown any traces of leukemia. The weekly dose of chemo will continue for the foreseeable future.
Now, I am facing a new battery of tests as the doctors investigate how I've responded to all of my treatments. On Friday, I will have another bone marrow biopsy to make sure there's nothing fishy going on there. Next Tuesday, I will be having a MRI to see what is going on with the lesions. And then we will have yet more time to wait for all of the results.
Because I don't spend enough time with doctors, yesterday I went to the dentist. Chemo and radiation do a number on your teeth...but at least my cavities are all filled now!
August 5, 2007
Howdy! The weekend was pretty quiet and very hot here in NYC. Yesterday, my mom went home to Louisiana, since things are relatively under control here and since school starts again for her tomorrow.
On Friday, I had yet another dose of chemo. The sample of CNS fluid that they took earlier in the week showed no traces of leukemia, which is great. Apparently, I may be going down to chemo only once a week, but it's a little unclear. Friday we saw one of the transplant doctors that we haven't had an appointment with-literally-since the transplant, and we're not sure if she's on the same wavelength with my usual doctor. So we'll see.
They are paying close attention to how my blood is reacting through all of this. In theory, the chemo is only supposed to impact my nervous system, and stay fairly self-contained (although it didn't stay self-contained enough to prevent me from looking like a road company star of The King & I). My Friday blood test again showed that I'm slightly anemic, and my blood levels are a bit off. They are going to keep an eye on them, and if necessary do another bone marrow biopsy soon to make sure that the leukemia hasn't popped up anywhere else.
I am feeling ok, but I'm really tired all the time. I'm doing my best to maintain normal activities, though, and will be going to work again this week. We will keep you posted!
August 2, 2007
Hello everybody! Just a quick update today. Tuesday's chemo went well with no problems whatsoever. The multiple rounds of chemo are making me slightly anemic, though, so I have even less energy than usual. Still, this week I went to work on non-chemo days and I'm slowly getting caught up.
Speaking of work, I have to head off there now, so I'm going to cut this short. More later...
July 29, 2007
Howdy all! Contrary to what the doctors assured me, my hair began to fall out in chunks Friday. We buzzed it Friday night, so now I'm sporting a concentration camp-chic 'do again. It looks terrible, but as we've seen, it does eventually grow back.
My skin looks bad, too. I've got brown marks all over my cheeks and around my eyes. It could be worse, I guess.
Tomorrow-Monday-I'm going to try going back to work. I probably won't be able to stay the entire day, but I'll be there as long as I can be.
And that's about it. The chemo schedule is the same this week-Tuesday and Friday. No major side effects after this past Friday's treatment. Hopefully that will continue!
July 25, 2007
Hello everybody! Good news-at my appointment yesterday, we discovered that the cell count in my last head juice draw is down to zero! This is great news, but it doesn't really change my chemo schedule. I'm going to continue to receive two treatments a week for the foreseeable future.
My chemo session yesterday was thankfully uneventful. They gave me all kinds of drugs to counteract the side effects, and they worked. I get a dose of a different kind of chemo Friday.
Thanks again for all of your cards and e-mails. They are really appreciated!
Well, that's about it. We'll try to post another update over the weekend.
July 22, 2007
Howdy all! As the doctors promised, the weekend was uneventful. I got a dose of head chemo Friday afternoon, and aside from feeling a little bit tired for much of the weekend, I felt okay. I kept myself busy over the weekend working on the Web site.
Chemotherapy will continue indefinitely as the doctors try to get rid of all the leukemia in my CNS. As of Friday, my blood levels continue to look good, which points to the fact that my bone marrow is still under control. As of now, I will stay home from work again this week to give myself some time to recuperate from all of the radiation last week. Again, the doctors have told me that it can take a while-up to a few months-for the radiation treatments to have their full effect.
So the plan for this week is that I will get chemo on Tuesday and Friday. The chemo I'm getting on Tuesday is a different one than what I received Friday, so we'll be watching closely for side effects. I am feeling decent, except for fatigue and an occasionally unhappy stomach.
My mom is still here and helping shuttle me back and forth from Forest Hills to all of my doctors' appointments. Chris has gone back to work and the people at Thirteen are being fantastic about letting him support me through all of my treatments.
That's all for now. I will post again mid-week!
July 18, 2007
Hi all! Here's your midweek update. Today, I completed the fourth of my seven radiation treatments. For those of you keeping track, I'm halfway done! The treatments are very quick-each takes less than five minutes-and I spend more time in the waiting room and in the car service than I do getting treatment. I haven't had any noticeable side effects, and the doctor told me today that-if necessary-they could give me more rounds of radiation later without my becoming a drooling idiot. Or even more of a drooling idiot.
On Monday, I saw my bone marrow transplant doctor. My blood continues to look fine, and there is no evidence of leukemia relapse in my bone marrow. They are going to continue watching it very closely. On Friday, I will be going in for my next round of chemotherapy. They will be giving me a different type than last time, but we'll have to watch and make sure it doesn't send me into hyperspace. The chemo will be continuing indefinitely (probably twice a week) as they try to kill off all of the leukemia.
This morning I met with the neurologist. He feels fairly confident that this week's chemo should go ok. And he informed me that it can take up to three months for the radiation treatments to have their full effect; so once again, we're going to be playing a waiting game to see if they have finally nailed all of the leukemia cells, lesions, etc. He reinforced that leukemia cells are typically extremely sensitive to radiation, so we will keep our fingers crossed.
Once again, thanks for all of your emails, good vibes, and positive thoughts. We will keep you posted as things continue!
July 15, 2007
Hello all! I hope everyone is enjoying the summer so far. I can't believe we've already reached the mid-point of July. For those of you who don't know, there have been some developments here over the past couple of weeks that I wanted to tell you about.
Just about two weeks ago, my doctors did a routine test of my cerebral/spinal fluid (something they have been doing every couple of months since before my transplant). The test revealed that there were some white blood cells in the fluid, and there are not supposed to be any cells at all there. More in-depth tests soon revealed that the leukemia has returned to my central nervous system (CNS).
That's bad news, but it could be worse. The doctors did a biopsy of my bone marrow, and thankfully discovered that my bone marrow is 99% donor marrow and 100% free of leukemia. Because of the mysterious "brain/blood barrier," it is possible for the leukemia to return in the CNS and not in the bone marrow. (Since leukemia cells are produced by bone marrow, though, no one-including the doctors-can really explain how they can return in one place and not the other.)
My doctors immediately decided to start giving me chemotherapy to address the leukemia (once again, the chemo goes in through the port in my head). On Friday, July 7, they gave me chemo that was a long-acting two-week dose.
My body was not at all thrilled with the chemo they gave me. I felt fine immediately after getting it, but by last Saturday morning, I was extremely sick. Chris ended up calling an ambulance and we went in to Mt. Sinai. On Sunday, I was very, very sick. The chemo had given me what the doctors call "chemical meningitis." I don't remember most of the day, but from what I've been told, things looked pretty grim. I went from being catatonic to ripping the IV out of my arm to hallucinating and going blind in nonstop intervals for about 20 hours. The doctor told my mom (who had arrived on Saturday with my aunt) to get my dad and sister up to New York ASAP, because they were unclear as to what was happening.
By last Monday morning, however, I was my normal self. The drugs they gave me to counteract the chemical meningitis made an unbelievable difference. After doing some additional tests, the doctors had more upsetting news: the leukemia has formed two "clumps" or lesions on my brain. These clumps can be extremely resistant to chemotherapy, so the doctors have decided to give me a weeklong series of radiation treatments to hopefully get rid of them. Obviously, since we're talking about my brain, the doctors have to be very careful about how much chemical or radiation treatment they give me, while simultaneously trying to get rid of the leukemia.
I came home from the hospital on Friday afternoon. This week, I am going in to the hospital every day for outpatient radiation treatments. I am feeling pretty tired, my eyes hurt (the clumps are near my optic nerve) and I have some headaches, but I am doing ok. Most of my family has gone back to Louisiana; my mom will be staying with Chris and me for the next little while.
Needless to say, this stinks. I am pretty tired of being sick, and to have this problem crop up again is very frustrating. We've just got to take each day as it comes, and see how my body responds to this new battery of treatment. Though we didn't get the word out very quickly on this latest string of developments, I want you each to know how much your support, good wishes, prayers, and love have meant to me, Chris, and my family since all of this started over two years ago.
To keep everyone in the loop, I will start updating the Cancerland blog again at http://www.tvdvdreviews.com/press/cancerland.html. We'll do our best to put up an update every few days as we go through this latest series of events.
Jonathan
To visit the old Cancerland, click here.