Television. One DVD at a Time.

March 28, 2007
Hello everyone! The results of last week's CT scan are in. The great news is that the scarring that appeared on my lungs when I was first tested last summer is completely gone. This means that the medication I've been taking did its job and got rid of the non-viral pneumonia. The scan also shows no sign of graft vs. host disease. It's less accurate at determining the presence of GVHD, however, so these results do not mean that I don't have it, especially since I still have many of the same unusual breathing symptoms that I had when all of this started.

I had a checkup with one of my bone marrow transplant doctors yesterday, and she said that the breathing problems may just be something that I have to get used to. GVHD isn't uncommon, and in some ways it's a good sign because it shows that the new bone marrow is in my body and fighting all of the bad stuff. I need to start exercising more so that I can strengthen my heart and the rest of my body. When the lungs aren't working properly, the heart and the other systems work overtime to compensate, so it is important to make sure that they are functioning at their best. That could help to alleviate some of the worst symptoms.

My pill intake has decreased again. I am no longer taking any steroids, and one of my precautionary antibiotics is also being discontinued since my immune system is getting stronger. Theoretically, we'll dump more pills after my next visit.

All in all, I'm feeling fine. I'm still feeling tired, but my adjusted work schedule is really helping. My breathing is manageable, but it's hard to get an idea of exactly where I am because the weather changes so much from day to day. (The weather can sometimes make my breathing better or worse.) Things are going so well that I don't even have to go back to the bone marrow clinic until June.

Since we are turning the page and heading for a new chapter in my recovery, I think that this is a good time to bring my Cancerland diaries to an end. Even though I won't be updating the blog, it will remain here on the Web just in case you get nostalgic ("Remember when Jonathan kept going temporarily blind? Good times..."). Thank you for participating in this one-sided conversation over the last year and a half. Now let's make it a two-way conversation - feel free to email, call, or snail mail me for updates on health and life in general. Talk to you soon!

Jonathan "Time to Get Back to Normal - Whatever That Is" Boudreaux

March 21, 2007
Hi all! I had a full day of checkups yesterday, but not much new to report. First thing in the morning I saw the neurologist. He never really has much to say - I think he just wants to make sure I can still walk and talk without bumping into the wall. So far, I can.

After an early lunch, I headed off to take another one of those breathing tests. Then I was off to the pulmonary doctor. She compared the results of my last five breathing tests and said that the results were mixed. My lung capacity has gotten at least a little better each time. The amount of air that I'm able to exhale has been inconsistent. It started off at one level, dipped, and is now slowly going back up. She says that could be a sign that I'm getting better, but she's concerned that I haven't really been responsive to the medications. Out of fifty patients she's treated with my form of non-viral pneumonia, only two haven't received good results from taking the meds. She wants to figure out why I'm one of them.

As part of that, I took a special CT scan yesterday afternoon. The results of the scan should definitively show whether or not we're dealing with graft vs. host disease rather than non-viral pneumonia and then maybe they can readjust their planned course of attack.

As far as my breathing is concerned, it seems to be maintaining a consistent level. Sometimes it's a little better, sometimes it's a little worse. It isn't really preventing me from doing anything, but it is a nuisance. It would be nice to breathe like a normal person again.

And that's that. Happy Spring, everyone!

March 14, 2007
Hello! Another week, another exciting update. I had another checkup yesterday, and all is well. A blood test showed that all of my numbers are perfectly normal. My pill intake has been decreased once again, and provided that all goes well, I'll be taken completely off of every drug that suppresses my immune system during my next appointment.

I am working from home today - not because of the weather (it's actually a nice day) but because I have a project to work on that can be done more efficiently from home. It will also give me a chance to get more rest.

Otherwise, there isn't that much to report. I guess I'd better get my work day started...even before I change out of my pajamas!

March 8, 2007
Hello all! For those of you who breathlessly await my update every week, I'm sorry that I'm a little late this time around. Hopefully you were able to find something better to fill your time!

There isn't really anything to report. According to the podiatrist, my toe is fine. I stopped taking the antibiotics I mentioned last week, and within 36 hours started to feel better, so I'm feeling much better, too.

As boring as it might be, that's all the news I have. And now I must run to work. Literally. It's either that or freeze somewhere along the way!

February 28, 2007
Howdy! Last week's visit to the podiatrist went incredibly well. There was a momentary flash of pain when he cut my ingrown toenail with these strange-looking curved scissors, but it was followed by immediate relief. I can walk again! I have a follow-up appointment tomorrow just to make sure everything looks okay and is healing properly. I don't really anticipate any problems.

The only negative thing to come of taking care of my ingrown toenail is that the antibiotics given to me by the bone marrow transplant team to take as a precaution after the procedure really upset my stomach. Hopefully that will go away soon.

Speaking of going away, I'm off to work. Enjoy the last day of February!

February 21, 2007
Happy Ash Wednesday! Doesn't quite have the same ring to it as "Happy Mardi Gras," but I guess it'll have to do. Last night, we went to a popular Times Square area restaurant - Virgil's BBQ - for their special Mardi Gras celebration. They had a live band and an expanded menu for the evening. The band was okay (except that they took a REALLY long break right after we arrived) and we've always liked the food there, but the atmosphere just wasn't the same as our old haunt. I guess next year we'll continue the search for a suitable replacement.

In a definite sign that I'm getting old, tomorrow I have to go to a podiatrist. I have an ingrown toenail, and the bone marrow transplant team wants to make sure that it doesn't get infected. Plus it would be nice to be able to walk ten feet again without wincing.

Well, I'd better hit the subway and head off to work. I'm already running late - dinner last night wiped me out. Enjoy the rest of your week!

February 14, 2007
Ladies and Gentlemen: the results are in. The bone marrow biopsy taken three weeks ago shows absolutely no sign of those bad cells. There are several possible explanations, but two are the most likely. The first is that the original results were a "false positive." The second is that the reduction of the drugs that suppressed my immune system caused my new marrow to "eat up" the bad cells. Either way, this is great news!

Friday I also took another breathing test. It showed that my breathing hasn't gotten any better or worse than it was the last time I took the test (back in December, I believe). Since suppressing my immune system obviously hasn't helped my breathing (and stopping the pills hasn't made it worse), I am no longer going to take those particular drugs. I may even have to get a smaller pill organizer - my new dosages look so lonely in my giant-sized case.

For my LA pals, I can't believe that Mardi Gras is next week. Unfortunately, we found out that the Cajun place we normally celebrate Mardi Gras closed during the summer. The entire block is being torn down and replaced by a high rise. Progress! Plus we didn't get to go last year...something about a bone marrow transplant...so it's sad that we won't be able to see our usual cast of Mardi Gras characters. We're trying to see if there might be another place for us to go.

Well, I think that's it for today. It's sort of rainy, sleety, and snowy today, so I'll be working from home. Have a Happy Valentine's Day...and a Happy Mardi Gras!

February 7, 2007
Howdy all! The preliminary results of my last bone marrow biopsy are in. They show absolutely no sign of leukemia. Still no results from the second phase of the test - the one that will show whether or not I still have those abnormal chromosomes. We should have those results next week.

The doctor did point out something interesting. It seems that all of our bodies - yes, even yours - produce cancer cells on a semi-regular basis. Most of our immune systems, however, know how to step in and destroy them before they get out of hand. It's when our immune systems lose control that cancer is allowed to develop. So not only could my previous results have been a false positive, they could have been a "snapshot" of my marrow before the new immune system had a chance to do its job.

In other news, my four year old nephew came for a visit this weekend. He didn't come by himself - he brought along my mother, my sister, and my sister's best friend, Jill. We had a great time. He rode in airplanes, subways, taxis, and a rocket ship (we had dinner on Mars at Mars 2112) for the first time in his life. His favorite part of the trip? Playing what he calls 'intendo.

Well, now I must bundle up and head out to work. Winter has arrived here and seems determined to make up for lost time. Stay warm!

January 31, 2007
Hi everyone! As you may have seen in my last entry, the doctors discovered that in the 1% of my old bone marrow that remains inside of me, there were some abnormal chromosomes. They aren't leukemia cells, but they have the potential to turn bad. It's also important to keep in mind that they are a very tiny amount of that 1%. Of course the goal is to have NO amount of that 1% consisting of bad cells. As a result of that discovery, the doctors took me off all of my immunosuppressants (the drugs that prevent my new bone marrow from attacking my body). The hope is that my new bone marrow will go on the offensive and get rid of the bad cells.

The good news is that I got through last week and the weekend without any severe reactions to being taken off of the immunosuppressants. Keep in mind, I've been on a LOT of them since the transplant. They keep my new marrow "in check" and under control, and they were also being used to treat my lung problems. The doctors aren't quite sure how my body (and my immune system) will respond without a suppressed immune system, so we are on the lookout to see if I get any rashes, get sick to my stomach, etc. These kinds of reactions would be an indication that my new bone marrow is attacking me (which, provided that it is a mild reaction, could be good since it might get rid of the bad cells).

I went back to the doctor Monday. They did a new bone marrow biopsy to check out if the cells with bad chromosomes have a) disappeared, b) stayed stable, or c) increased. Because so few of those bad cells were found, there is also a chance that the last biopsy was a false positive. I have another appointment Friday just so that they can monitor what my body is doing. They may have some preliminary results from the biopsy then, but personally I doubt it. After all, last time it took them three weeks to discover the bad cells.

Now on to some great news - we've finally made contact with my donor. Sort of. Two cards were forwarded to me by the bone marrow registry. Neither of them is signed, although both include initials. Here is the text of the first card:

First of all, I would like to apologize that this letter took so long. During the World Championship of Soccer here in Germany, I had work a lot so that only now I'm finding the time to write to you.

At the same time I want to congratulate you to your "first" anniversary.

I was very happy to receive your letter. Even more I was glad to hear that you are OK again and that I was able to help you. Health is one of the most precious gifts of nature.

I wish your friends, family, and especially you, that you always stay healthy and your dreams come true.

I would be happy if we both stay in contact.

The second card is a Christmas/New Year's card. When I go back for my checkup on Friday, I'm going to try to find out if it's possible to get his address so that we can keep up correspondence without using the bone marrow registry as an intermediary.

And that's about it. Day to day, I'm mostly feeling fine. I am frequently tired...I can't seem to get enough sleep no matter how much I try...but other than that things are okay. I'm still going to work with reduced hours.

We'll try to keep you updated as we get more information.

January 24, 2007
Hi gang! Yesterday I received more results from my latest bone marrow biopsy. I think it's done in two steps. The first is quick analysis. It is then followed by a more detailed study. According to the detailed study, I am currently at 99% donor marrow. Only 1% of my old marrow was present at the time of the biopsy. That's the good news. Unfortunately, that 1% is showing a small amount of those genetic abnormalities that mark my leukemia - perhaps one out every three hundred cells in the 1%.

According to the doctors, there is no reason to panic. As of yesterday, I am off of the medications that suppress my immune system. This is so that the donor marrow will hopefully buck up and wipe out the bad cells. We have to be on the lookout for breathing problems, though, since I was taking those drugs to fight my non-viral pneumonia.

Other than that, I don't have many details. All of this information was given to me over the phone once the doctor's office received the detailed results. Next week, I'll have another biopsy just to see where we stand. I'll keep you updated!

January 17, 2007
Hello everyone! Yesterday I had another checkup - including the results of my latest bone marrow biopsy - and everything is looking great. The biopsy shows that I am still 98% donor, and there is no sign of leukemia. Since my breathing problems haven't gotten any worse, my drugs are being slowly tapered again - I'm losing another half of a pill every other day. Better than nothing, I guess! I'm going to take another breathing test in the next week or so just so that they can have solid information on whether or not my breathing is improving.

Work is going well. I'm still working partial days. I'm usually very tired by the end of the day, but I'm mostly managing to stay caught up.

Finally, don't get jealous, but last night we went to see Barry Manilow in concert at Madison Square Garden. We bought tickets at the spur of the moment Sunday night when we saw a commercial on TV saying that they were still available. We had a great time listening to him sing all of his hits. Chris was amazed that Manilow has had so much botox and face work that he could barely move his lips while singing. My theory is that he's performed these songs so many times before that he doesn't have to move his lips. The sound just spontaneously comes forth from his head.

And that's it. Have a terrific week - and be sure to write the songs that make the whole world sing!

January 4, 2007
Happy New Year! Sorry that this week's update is so late, but it's been a busy 2007 so far. Tuesday I returned to work, and then yesterday I had a doctor's appointment. My numbers are still great - they are the same as the average guy my age - and my meds have been decreased ever-so-slightly. Not much - we're talking by half a pill every other day. It's a start, though.

Other than that, I don't have much to report. Here's to a happy and healthy 2007!

December 27, 2006
Howdy all! After a nice Christmas visit, my mom is on her way back home. Last Wednesday we went to see the new hit Broadway production of "Mary Poppins." It is a pretty fun show, especially the songs from the movie. The newer songs aren't as good. The show does have a few amazing moments, though, like when Bert dances up the proscenium arch, across the top of the stage, and down the other side. At the end of the show, Mary flies off over the audience and into the balcony. The next day we saw the Radio City Music Hall Christmas Spectacular. My mom had a good time, but I have to admit that this isn't my favorite show. Still, I'm glad we went.

For the rest of her visit, we mostly spent time around the apartment watching TV, eating, etc. Occasionally we ventured out to do a little shopping.

On the health front, my energy level hasn't increased since last week. I've been getting about ten hours of sleep every night and taking one or two naps a day. I haven't been this tired since I first received my transplant. Of course I haven't been on this amount of medication since I first received my transplant. Hopefully I'll start to perk up whenever my meds are tapered off.

Well, that's about it. I hope that everyone had a great Christmas. And here's to a terrific 2007!

December 20, 2006
Happy holidays everyone! My mom's plane has literally just touched down as I write this. She's going to claim her luggage, hop in a cab, and then head on over to see our new apartment for the first time. It should be a fun Christmas visit. We don't have much planned yet, but I have a few surprises up my sleeve.

Yesterday I had another doctor's appointment, and it was decided that I'll stay on my current medication dosage for at least another two weeks. I've shown improvement, and no one wants me to backslide the way I did last time when my meds were reduced too quickly.

This medication combo does have a few side effects. I've already mentioned my extremely puffy cheeks. Even worse, though, is that I am extremely tired most of the time. EXTREMELY. And since it is caused by the pills, the tiredness unfortunately can't be fought with naps or sleep. I wake up in the morning just as tired as I was when I went to bed.

I can't complain too much, though. It's another Christmas, and I'm still here! Enjoy your holidays!

P.S.: Today is Chris' birthday, so drop the old man a line if you want to!

December 13, 2006
Hello everyone! Not much to report this week - no doctor's appointments! I did see the bone marrow transplant team late last week, and my meds have been adjusted again. I'm not taking any new ones, but the dosages of the ones I've been taking have been upped. I hate having to take more pills, but the good news is that this combo seems to be working! My breathing shows definite improvement. Let's keep our fingers crossed that this trend continues.

Chris is in Montana on business for the rest of the week, so I'm spending most of my nights plopped down in front of the TV. Which, of course, is business as usual. We are still enjoying the new apartment. It really feels like home. The buying process was really stressful, but we're both happy that we did it.

And that's about it! I'm off to work!

December 6, 2006
Howdy all! Can you believe it's December already? And that Christmas is less than twenty days away? Amazing.

Yesterday I had an appointment with the pulmonary doctor about my lung condition. Everything is pretty much the same as it was last time around, and she wants to continue with my new medication to see how my body reacts to it. Apparently, it can take up to six weeks for the drug to really kick in.

In related news, as part of getting my vital signs, the nurses weighed me yesterday. I am now the same weight I was before my bone marrow transplant! Of course it could all be from my medication-bloated face. At least I'll have an extra layer to get me through the winter.

Work continues to go well. I'm finally beginning to feel caught up.

Speaking of work, I must dash. It's time to hit the subway!

November 29, 2006
Hello! I hope that everyone had a great Thanksgiving. Ours was terrific. Our friend Katie was in town. We had way too much turkey, stuffing, and sweet potatoes, watched It's a Wonderful Life, played board games, took in a Broadway show, went on a day-long shopping excursion, and had brunch with friends. All on Thanksgiving Day. I'm kidding! Of course we spread it out over the entire weekend.

At my doctor's appointment yesterday, the bone marrow team decided to re-jigger my meds again. My steroid intake has now been cut in half, which is a good thing, because it has started to make me look bloated. I used to have cheekbones, now I look like one of the Campbell's Soup kids. They also doubled the dose of the new drug that I started taking last week. The one main side effect of that drug is apparently puffy eyes. They do look a little puffy when I wake up in the morning, but so far the puffiness has gone away within an hour or so. Of course it could just be that I'm getting old.

Well, I'm off to work. See you in December! Have a good week!

November 22, 2006
Howdy everyone! Yesterday I went in for another checkup and the doctors have decided to add a couple of medications in order to improve my breathing. One is simply a higher dosage of a medication I'm already taking, and the other apparently has very few side effects. They are hopeful that this will help to clear things up. My breathing is much better than it was before, but I seem to have reached a plateau on the current medication. Their current thinking is that I have chronic graft versus host disease, which isn't necessarily a bad thing because it helps to keep away leukemia.

Work is going well. I'm getting caught up, and my reduced hours prevent me from getting too tired. Plus our new apartment is closer to the express subway, so it takes me less time to get into work every day.

Our friend Katie is in from Chicago for Thanksgiving - our first houseguest in the new apartment! We're really settling in. Only a few boxes are still packed, mostly because we're trying to decide exactly where we're going to put the stuff.

Happy Thanksgiving!

November 15, 2006
Hello! I hope you had a nice vacation from my rantings last week. Wednesday was moving day. Everything went well despite a little rain. A LOT of rain, actually. The boxes got a little wet, but who cares? Thursday we received a bunch of furniture deliveries, and we're now settling into the apartment. We're really enjoying the new place. The building is great, the apartment is nice, and best of all it's ours. Well, ours and the bank's. Our internet access was finally re-installed this morning, so I thought I'd take a moment to put up an update.

Yesterday I had another checkup at with the bone marrow doctors. My blood counts are perfectly normal for a person of my age. We don't really like the slow pace at which my lung problems are (or aren't, as the case may be) clearing up, so next week the doctors may add another medication while they take me off of the steroids. Apparently they have to step me off of the steroids very slowly because my body is so accustomed to it now that ending it immediately might cause problems. They've had good results with the other drug, though, so we're hopeful that it will clear up the non-viral pneumonia symptoms. I should add that I'm feeling much better than when my breathing first started to be labored, but I seem to have just reached a plateau with the steroids.

Well, let me run. It's time to head off to work on yet another rainy NYC day!

November 1, 2006
Howdy all! We are now homeowners! The closing went smoothly last Wednesday, although there were so many papers to endorse that I now automatically sign my name whenever I pick up a pen. The painters finished the apartment in record time, but we are still waiting for the carpet installers to get back to us. Hopefully the new carpeting will be installed Friday. Either that or we may just have the old carpet cleaned. The plan now is for us to actually move on Monday, November 6. We can't wait. Our old apartment is filled with boxes and junk. We can barely move around! The new apartment doesn't quite feel like home yet (of course none of our stuff is there, so it wouldn't), but the new paint job really makes it feel like it's ours.

Here is our new address:
69-10 Yellowstone Blvd, Apt 622
Forest Hills, NY 11375

The phone number stays the same.

Work is going well. I am slowly but surely catching up on everything. I can almost see the surface of my desk now!

Well, that's about it. I apologize for the birthdays I've missed and the emails I've left unanswered. Hopefully things will be back to normal when we're no longer living out of boxes!

October 25, 2006
Hello everyone! A year ago at this time I was in the hospital and began having mysterious bouts of blindness. Today, we're heading out to our closing, officially buying an apartment. It's the American dream! The becoming a homeowner part, not the blindness thing.

In old news, I've posted a couple of photos from Light the Night on the site. They're on a separate page just in case you have a slow internet connection and don't want to download them. By the way, if you wanted to make a donation but didn't, it's still not too late. You can still donate by visiting this page:

http://www.active.com/donate/ltnNewYo/1833_jonjude

And that's about it for this week. We are busy packing and organizing for our eventual move. Before we move into the apartment, we have to get it painted, have some carpeting replaced, and give it a thorough cleaning. That means that we probably won't be in the apartment for another few weeks. We'll keep everyone updated on the move in the coming weeks.

October 18, 2006
Howdy all! Monday was my first day back at work. Things went pretty well, all things considered, and I should be back in the swing of things in no time. To celebrate, I took yesterday off. Actually, I had three (yes, three) doctor's appointments, so it was a full day of doctoring for me.

First up was another breathing test. Of the three main things that are measured, I did better this time around in one of the categories and about the same as last time in the other two. During my appointment with the lung doctor, it was decided that they probably cut back on my steroids too soon, so I'm being bumped back up to what I was taking a few weeks back. I think this is a good plan because I noticeably felt a little worse after cutting back on the medication. I'm going to take that original dosage for the next two weeks and then reduce the dose by half a pill. My x-rays are much clearer now, too.

At the BMT unit, I found out that all of the "one year" tests I took a few weeks back look great. There is no sign of leukemia or of the genetic abnormalities my leukemia had produced. Plus I'm at 98% donor marrow. I do have to take a few vaccinations, but they have to wait until I'm finished with the steroids.

In other news, we've been approved by the co-op board and our closing on the apartment is tentatively scheduled for a week from today. By this time next week we could be homeowners!

Well, that's it for now. I have to run off to work!

October 11, 2006
Hello! I have a lot of stuff to cover this week - all of it good - so let me jump right in. The Light the Night Walk Thursday night was terrific. Once I got my white "survivor" balloon, I carried it like a badge of honor. I was even reluctant to let Chris hold it for me when I went to the bathroom! Chris and our friend Marsha carried red balloons representing all of you who have supported us over the past year and a half. As we walked up the bridge's pedestrian onramp, we ran into Rita, one of the nurse practitioners from Mount Sinai. It was good to see a familiar face, and I think she was happy to see one of her patients feeling well enough to participate in the walk. The weather was perfect, and it was nice to walk across the Brooklyn Bridge for the first time. I will admit it was a little smoggy, though, from car exhaust.

For those of you wondering how the balloons light up, a Christmas light fits into a plastic piece at the tip of the balloon. A copper wire connects that light to a battery pack similar to a small flashlight. The wire also acts as the balloon's string. Mine didn't last all that long - I think it went out about five minutes into the walk. It didn't really matter, but they might want to work on that for next year. After all, seeing a bunch of unlit balloons sort of ruins the symbolism of the event!

Tomorrow - Thursday - is the one year anniversary of my transplant. Please, no presents. Cash will be fine.

Last week we also had our interview with the co-op board. We met with two members, and they were scheduled to report to the full board at their monthly meeting last night. We should know later today whether or not we were approved. We're pretty sure we'll be approved. The interview went extremely smoothly. Apparently our application was so thorough and detailed that they really didn't have any questions for us. We were in and out in under fifteen minutes. Once the approval is given, the lawyers will schedule a closing date. For those of you keeping track, we put in a bid on the apartment way back in late July. At the time, we worried that we were buying too early since our lease doesn't expire until the end of November. Obviously, though, we should have started in April! We've begun packing all of our non-essential stuff like books, CDs, and DVDs. Now we have so many boxes scattered around the apartment that it's as if we're living in one of those rat mazes.

In other exciting news, I'm going to start working again Monday. I'll be in the office five days a week, but I have to work reduced hours because I still can't ride the subway during rush hours. Even though I'm sure the sofa will miss my bony butt, I think that it will be good for me - both mentally and physically - to get back into the work routine. In the meantime, I'm trying to get as much done around the apartment as I possibly can.

I'm sure I'm forgetting something, but that's enough for now. Even I'm bored with this too-long update, and I don't have to read it, just write it!

October 4, 2006
Hello everyone, and welcome to the "Nothing But Good News" edition of the weekly cancer update! Yesterday I went in for my one year tune-up where the doctors took ten test tubes of blood and performed a bone marrow biopsy. All of the blood is going to be used to determine things like whether or not I have to be revaccinated for certain "childhood" diseases. We'll have the results in a few weeks. My other blood counts were perfectly normal, so we're expecting that the biopsy will be fine. Plus, now that I've hit the year mark, I won't have to take as many biopsies - maybe every six months or so before it is cut back even more.

My breathing has improved so much over the past week that the drugs I'm taking are already being reduced. The level in my blood that showed I was having some sort of allergic reaction (which was an indicator of my lung problem) has cleared up, too, offering even more proof that I'm on the mend.

While we were at the doctor's office, I signed a consent form indicating that I would be willing to learn more about my donor and providing my contact information. The office will pass this info along to the bone marrow bank, and the bank will find out whether the donor is interested in swapping info. It is pretty exciting that I may get to know exactly who generously decided to help save my life. All of the information has to go through several channels before it gets to that point, though, so I don't think we'll know anything for a while.

When we got back from the doctor's yesterday, we were surprised to find a message on our answering machine indicating that our interview with the co-op board has been scheduled...for tonight! Yep, tonight at 7:30 PM we'll be sitting in a room with a bunch of strangers going over the details of our finances. Wish us luck!

Finally, tomorrow is the Light the Night Walk. I can't tell you how excited I am to commemorate the one year anniversary of the transplant as we walk across the Brooklyn Bridge for the first time. And remember - no matter how far away you might be, in our minds you'll be by our side on that bridge!

September 27, 2006
Hello! After a little over a week on my new medication, my breathing is much, much better than it was before. If I understand correctly, I'll be on this medication for about a month, and once I'm through with the treatment, all of the symptoms will be gone. Insert your own "breathing easier" joke here.

The Light the Night Walk is next week. If you'd like to make a donation, please visit this special Web page:

http://www.active.com/donate/ltnNewYo/1833_jonjude

For those of you who might be reluctant to use your credit card online, checks are also acceptable. You can make them out to The Leukemia & Lymphoma Society and send them to me at:
66-37 Yellowstone Blvd, Apt 6A
Forest Hills, NY 11375
I have to turn in checks right before the event, so if you would like to make a donation via check, please drop it in the mail ASAP!

And that's about it for this week. More later!

September 20, 2006
Hello all! Nothing but good news this week. Monday I went to the doctor's and was prescribed medication that should help to clear up my breathing problem. I started taking it Monday night and I'm already feeling moderately better. And I was again assured that there shouldn't be any permanent damage. Once the meds kick in, I'll get progressively better and should stay that way.

Yesterday we FedExed seven copies of our co-op application to the building's management company. If you want an idea of how much information we had to supply, the copies used a ream and a half of paper. Now we wait to hear back from them about being interviewed by the board of the building. At this rate, we should be homeowners by the time we hit 60!

As I mentioned last week, on October 5th I am going to be participating in Light the Night, a fundraiser for the Leukemia and Lymphoma Society. The anniversary of my bone marrow transplant is less than a week later, and I think this is a perfect way to commemorate the occasion. If you'd like to sponsor me, here is the link you can use:

http://www.active.com/donate/ltnNewYo/1833_jonjude

Any donation that you can give - $25, $100, or the change you find in your sofa cushions - will help me to meet or exceed my goal. It's for a great cause, and I can't wait to participate.

September 13, 2006
I am happy to report that the bronchoscopy went really well last week. I had absolutely no pain either during or after the procedure, and they were able to get enough of a sample to make a diagnosis without going through the more difficult inpatient version of the test. It seems that my breathing problems are being caused by a non-viral form of pneumonia caused by some sort of inhaled pathogen in my lungs. From what I've read, it's almost like an allergic reaction - some tiny thing got into my lungs, my body interpreted it as a threat, and fought back so hard that in the process the allergy fighters have clogged my lungs. Apparently this is highly treatable and I should be receiving medication later in the week. Luckily, it is one of the medications I had been taking before, so I know that my body will tolerate it.

We FINALLY have a totally signed contract on the apartment. We are in the process now of putting together all of the paperwork that we need to present to the board of the building. It is a pretty complicated process that, frankly, is being made a little more complicated than necessary by some of the parties involved. Things are improving, though. The seller is a member of the board, and as soon as we turn in our paperwork, he will try to convene a meeting so that we can go through the interview process ASAP.

Finally, Thursday October 5 is the Light the Night Walk in Manhattan to benefit the Leukemia & Lymphoma Society. Since this is pretty close to the one year anniversary of my transplant, I think that we are going to participate in the walk to celebrate. If you want to make a donation to support my team, visit this web page. It's not one of those things where you donate a certain amount per mile - you just choose an amount, send a check, and that's it. Anyone living in the NYC area can also participate in the walk if they want to, and those of you around the country may want to see if any local events are happening in your area. I'm really looking forward to this event. Survivors will carry illuminated white balloons and supports will carry red illuminated balloons, and I believe we'll be walking over the Brooklyn Bridge which I've never done before. I think it will be a great way to commemorate my transplant and help to raise money for leukemia research at the same time. Donate if you can!

September 6, 2006
Hi all. Welcome to fall! It's hard for us to believe that it is September.

Today (Wednesday), I am going in for a short outpatient procedure known as a bronchoscopy. During the procedure, they will put an endoscope down my throat and into my lungs to get a peek at what's going on in there. In addition, they will take a small tissue sample.

The goal with this little bit of fun will be to help the doctors determine what exactly is going on. Their two prevailing theories are that I either have a low-grade infection (fungal or viral), or a touch of graft-vs-host disease...but they want to find out exactly what it is before they start treating the wrong thing. If it is GVHD, the treatment is immunosuppressants, and they don't want to suppress my new immune system unless it is necessary (obviously). The hope is that the sample they take will conclusively show what's going on.

I'm feeling good. Over the weekend, Chris and I walked around quite a bit and went shopping, and my breathing didn't bother me at all. All of the doctors have stressed to us that this lung issue is not a red-alert situation...we just need to find out what is happening so they can treat it correctly.

August 30, 2006
Howdy folks! Yesterday we added a new doctors' office to our repertoire: we went and saw a pulmonary specialist about my breathing issues. As I said last week, the CT scan of my lungs revealed that I have some scar tissue in my lungs, which is most likely causing my occasional shortness of breath. In other words, the normal, healthy lung tissue has been replaced by scar tissue in a small part of my lungs. This scar tissue is known technically as "pulmonary fibrosis." There is also a very serious lung disease called "pulmonary fibrosis," but the doctor thinks it is extremely unlikely that I have that. So don't freak out if you do a google search. The scar tissue does not equal the disease.

The doctors are not sure what is causing (or did cause) the scarring. The scars could be from a recent or past infection (for instance, if you have pneumonia, you can have scars for the rest of your life). The scarring could be a result of some current or past medication (all of the chemotherapy I received is especially suspect). It could also be Graft-Versus-Host Disease in my lungs, which is not an uncommon after-effect of a bone marrow transplant. Of those options, GVHD is the least likely because my symptoms don't match it exactly.

The pulmonary specialists are going to confer about what they think the best course of action will be. I may have to get a lung biopsy so they can determine if it is GVHD. I also have a follow-up appointment-at the end of November!-so clearly the doctors are not thinking this is a critical, time-sensitive issue. The good news is that I am not debilitated at all, and can pretty much go about life normally (with occasional shortness of breath).

Other than that, Chris and I are now working on our Co-op Application Packet, the next step in the apartment purchase. Basically, we have to disclose every detail of our financial lives to the Board of the Co-op so they can determine if we are financially fit to live there. It's a LOT of fun.

And that's about it for this week. Have a great Labor Day!

August 23, 2006
Hello everyone! Yesterday we signed the contract on the apartment and I was diagnosed with pulmonary fibrosis. Well, that's about it for this week's update. See you next time!

 

What? You're still here? Okay, if you want some details, here you go.

The results of my pulmonary function test showed that I am taking in much less oxygen than I was when I took the test before the transplant. We followed the PFT with a CT scan of my lungs. The preliminary finding is that I have some form of pulmonary fibrosis, which WebMD describes as "an inflammatory lung disorder of unknown origin (idiopathic) characterized by abnormal formation of fibrous tissue (fibrosis) between the tiny air sacs (alveoli) or ducts of the lungs." Yeah, I don't know what that means either. All I know is that I often find myself short of breath, huffing and puffing even during a non-stressful walk on flat ground.

The good news is that it is highly treatable. It could be caused by one of two things: either it's graft versus host disease in my lungs or it could simply be damage from all of the chemo and radiation I received. In the next week or so, I'll be seeing a pulmonary specialist who will try to figure out which one caused the problem since they require different forms of medication.

After that wonderful appointment, we ran off and signed our contract for the apartment and turned in a deposit check. For those of you who don't live in New York, it is important to remember that we still aren't guaranteed that we'll be able to actually buy the apartment even with a contract. We have to prepare all sorts of other information and present it to the board of the building so that they can approve the sale...or not. So really the fun is only just beginning!

And that's really it for now. Get back to work, slackers!

August 16, 2006
Howdy all! My merry parade of medical exams has continued since my last update. Friday I took the Pulmonary Function Test to check my breathing capacity. I don't have the results yet. Well, I do have the results since for some reason they give patients a copy of the mumbo jumbo that the machine spits out after the test, but I don't really know how to read it. I'll get the details next week when I go back to my bone marrow doctors.

I also saw the ear, nose, and throat doctor Friday about my constant post nasal drip. In keeping with the grand tradition of doctors only giving me medicines featured in commercials, I'm now using Astelin, an allergy inhaler. It really helped for the first few days, but now the drip seems to be back. Maybe if I could figure out how to get the Astelin to actually stay in my nose rather than run directly out.

Monday I went to see a dermatologist about this irritating red rash (accompanied by dried skin) that covers a good portion of my face. The doctor compares it to - and I quote - "face dandruff." Ain't life fun!? He prescribed a cream that will hopefully clear it up, but it has to be approved by my insurance first.

And it continues! Friday I'm going to have a CT scan of either my sinuses or my lungs. I'm supposed to have both done, and while it seems like it would be easiest and most convenient to do both on the same visit, the hospital isn't really known for doing things the easy and convenient way.

Finally, there is this terrific show on public radio called "This American Life." I used to listen to it every week until we moved into this apartment and discovered that we could no longer catch the local station that carries it. Anyway, I discovered this week that in 1998, they did an entire show about a woman who was undergoing a bone marrow transplant. If you have an hour to spare and want to learn about what it's like to go through the process, click here to visit the "This American Life" site and then click on the little blue speaker. She received a totally different kind of transplant than I did (her stem cells were harvested and then put back into her after chemo), but the basic experiences and feelings are the same.

Still no forward motion on the apartment front, but we're hoping to sign the contract in the next day or so.

August 9, 2006
Howdy all! My week of excessive visits to the doctor has begun! Monday I returned to the eye doctor, and I'm happy to say that we seem to be a step closer to solving the chronic dry eye I've been experiencing since the transplant. The fancy prescription drops he gave me during my last visit didn't really help, but after only a few days, it seems like his over-the-counter alternative is a winner.

Yesterday I went in for my regular checkup with the bone marrow transplant team. All of my blood counts are at normal levels.

Tomorrow I have two appointments. First I have to take a Pulmonary Function Test to try to figure out why I've been a little short of breath lately. Then I have an appointment with an ear/nose/throat doctor because of the post-nasal drip that has plagued me since December. See what fun I have?

The apartment-buying process is moving along...s-l-o-w-l-y. Theoretically, our lawyer should have received a contract from the seller yesterday, and then we can move on to the next step, which should involve...well, I don't even know. As long as it doesn't involve going to visit a doctor.

August 2, 2006
I've only been back at work one week and I'm already taking the day off. It's so hot outside today that it's actually hard to breathe, and the power company is predicting blackouts by this afternoon due to the high demand for electricity. I figured it would be better to stay home than to try my luck in the heat and possible darkness.

For those of you following Mickey's health, he's doing well. He left the hospital yesterday. I spoke to him this morning for the first time since his surgery. He sounded fine - just a little groggy from his meds.

No health news to report for me, although next week I have not one, not two, but THREE appointments: one with the eye doctor, one with and ear/nose/throat doctor, and my regular monthly checkup. And, of course, they're all on different days.

Finally, the exciting new of the week: we've placed a bid on an apartment. It's a few blocks down the street from our current one. It doesn't mean we'll actually get it, though, because the process is so complicated. Even though we made an offer and it was accepted, until we get a contract the seller can continue to show the place in an attempt to get more money. Plus we have to fill out a ton of paperwork and get interviewed by other owners in the building so that they can decide if we are good enough to live there. The apartment is nice, though, and we're excited to take this step.

July 26, 2006
Hi all! My experiment with returning to work is turning out well so far. My first day - Monday - went off without a hitch. I didn't get too tired or anything. It's hard to believe that it had been an entire year since I'd been to work. I'll return today for my second day.

For those of you who know Mickey, my boss, his surgery went extremely well. Hopefully I'll be able to talk to him later today.

Other than that, there's not much to report. Tune in next week for more news!

July 19, 2006
Hi all! Things here are going well.except for the heat wave. Luckily I rarely have to leave the apartment, so I just turn on the a/c and vegetate on the couch. I did have to leave the apartment yesterday, though, for a follow-up visit to the neurologist. He says that everything looks great. He wants to see me every two months from now on so that he can decide how long I should continue to take my anti-seizure medication.

Speaking of medication, it looks as if I'll still be taking my last immunosuppressant for at least a few more weeks. My doctor needed to verify some of my blood levels before stopping the medication, and it seems that the blood sample that was taken last week got lost somehow.

So, here's the big news of the week. After being away for a year, I'm heading back to work Monday. Mickey has to be out of the office for several weeks, and it will make him a little more comfortable to have another pair of eyes and ears in the office while he's gone. I'll only be there part time - probably 11 to 3 on Mondays, Wednesdays, and Fridays - but it will be a good way to stick my toe in the water and see if I have enough energy to go back and forth to work every day. It looks like life is slowly getting back to normal!

And that's it from hot, sticky NYC. More later!

July 12, 2006
Hello everyone! Sorry that the update is a little late today, but I had a checkup this afternoon. The results from my biopsy are in, and everything looks great. I am still 99 to 100% donor, and there is no sign of the genetic abnormalities that marked my leukemia. It looks as if my final immunosuppressant will be stopped a little earlier than we first thought - possibly by the end of the week. My immune system will remain inhibited for some time, though.

While I was there, I also had some fluid drawn from the port in my head. This is a routine test that the neurologist wanted done. I have an appointment with the neurologist next week, so I should get the results then.

Chris has an appointment tomorrow about his kidney sand. Luckily, the periods of time between his pain is getting longer and longer, so we're expecting good news on that front, too.

As you can tell, all is going well here. Tune in again next week for a big (but good) announcement.

July 6, 2006
Hello all! I hope you had a great 4th of July. We spent the day watching Superman Returns. And I do mean the day - it's really long. It was entertaining, though. Chris isn't 100% better, but he is slowly improving. Otherwise, not much is going on here. More soon!

June 28, 2006
Not much to report on the health front this week.except for that fact that I switched roles with Chris. I was the nursemaid and he was the patient. It turns out that Chris has kidney sand - sort of like kidney stones, but much, much smaller. If he had kidney stones, the stones would have to be pulverized and then he'd have to pass them. Since he only has kidney sand, it's like he gets to skip a step! Yes, our apartment is slowly becoming a retirement home.

Have a great Fourth of July, and eat some barbeque for me!

June 21, 2006
Hi all! Yesterday's visit to the doctor was pretty uneventful. My bone marrow biopsy didn't hurt too badly, especially after I took a couple of painkillers. We'll get the full results in a few weeks, but the doctor is thrilled by how well I'm doing overall.

My pill intake has been decreased, too. I'm going to stop taking two nutritional supplements that had been prescribed to me. Because I used to take them several times a day, my daily intake is actually dropping by four pills.

And that's it! See, not very exciting, but pleasant nevertheless. Enjoy the first day of summer!

June 14, 2006
Hi all! Nothing to report on the health front this week, but I did hit a couple of milestones. Chris had to work Saturday morning, so I met him in the city and we spent the afternoon walking around the Union Square area, including Strand Books, Virgin Megastore, and Barnes & Noble. We topped it off with dinner at Chat 'n' Chew. This was my first visit to any of these places since the weekend before my transplant.

This afternoon I am heading to Manhattan for lunch with Mickey, my boss. Afterwards I'm going to have my hair cut for the first time in 18 months!

June 7, 2006
Hello everyone! Nothing new to report here besides a few minor ailments. And if any of you know a reverse rain dance, please feel free to perform it. I think it has rained every day here for at least two weeks.often starting in the early evening during my prime walking time. I'm still getting my exercise, though.by walking to the window and watching the rain!

For those of you who like theatre, remember that the Tony Awards will be on CBS this Sunday. The Rolfe Company's clients have four nominations, and again this year the design awards will be presented in a pre-show Webcast.

May 31, 2006
I had my monthly checkup yesterday and everything is looking great. None of the small physical complaints I have - throat sores, a slight rash on my arms, achy knees, excessive eye gunk - show any indication of being graft versus host disease. As the doctor said when I told her about my knees, "Well, you're getting old." Thanks doc! My pill intake has been decreased by one, but I'm also taking an extra dosage of another of my pills in an attempt to clear up my throat problems. When I go in next month, I'll have another routine bone marrow biopsy.

Yesterday I gave the transplant coordinator a thank you card for my donor. She will make sure that it gets passed along to the donor. It's all still anonymous, of course. I couldn't sign the card, and I don't know where it's being sent.

Chris returned from his visit home to Rochester Thursday night and brought Billie and baby Ian along with him for the weekend. Katie flew in from Chicago Friday, and Mark Kessler drove in from Long Island for a quick visit. We had a fun time, and it was terrific to see everyone again for the first time since my initial diagnosis.and to see cutie pie Ian for the first time ever.

May 24, 2006
Howdy folks! Not much going on around here.except for unusually high winds and a pollen count so high that you get covered with a dusting of the junk while walking outside. Needless to say I've barricaded myself in the apartment with a box of Sudafed handy. I wouldn't want to go outside, sneeze, and risk getting blown away.

Chris returned from his trip to Florida Sunday evening. He had a great time. So great, in fact, that he left again Tuesday morning to visit family and friend in Rochester. Later in the week, Billie and Ian will drive him home (I assume Billie will do most of the driving since Ian probably won't be able to reach the pedals) to NYC and spend a few days here. Katie will also be joining us from Chicago for the weekend, so it will be a full house!

Well, that's about it from here. Next week is my regular monthly checkup appointment. Have a happy Memorial Day!

May 17, 2006
Everything is going well here in NYC. Over the weekend, our friend Kay Daly visited from Chicago (minus her husband), and we had a really nice time. Kay was very adaptable to our weird schedule. We did all sorts of fun stuff. . .including a viewing of Nancy Drew, Reporter, from 1938, and a screening of the original Poseidon Adventure to celebrate the release of the new movie. On Saturday, I rode the subway into the city with Chris and Kay and we met up with a bunch of our friends for brunch and an afternoon of board games. It was great to be back in the old routine.

I am feeling fine, with the exception of a runny nose which seems to be caused by the gobs of pollen floating through the air.

Today, Chris and I went to see Poseidon. . .my first time in a movie theatre since last summer. It wasn't very good, but it was better than the TV miniseries last fall. Chris is off to Florida for a few days of R&R, and then we will be gearing up for our rush of Memorial Day weekend visitors.

May 10, 2006
Hello all! Here's your weekly update on the minutia of my health! Friday I went to see an ophthalmologist about the excess of eye gunk that's been plaguing me since my BMT. He says that my eyes are perfectly healthy and that the problem is most likely caused by the combo of chemo, medications, and other stuff I'd been receiving. He said that it could be GvH, but it's nearly impossible to tell. Either way, there's nothing out of the ordinary about my eyes.

Yesterday I had another appointment with the neurologist who, oddly enough, shares a suite with the ophthalmologist. He says that everything looks fine and that I seem to be getting better.

Yesterday I also took the subway to the city for the first time since September. I even visited the office for the first time since August. I had a nice, leisurely lunch with Mickey, my boss, before heading off to the neurologist's office.

That's really all I have to report. More later.

May 3, 2006
Here they are - in no particular order - the ten questions that Chris says people ask most about me:

How do you feel on a daily basis?
Mostly, I feel fine. I'm usually tired, though. Sometimes my energy level drops after even the simplest of physical tasks, like washing dishes. Still, I'm up and dressed every day, I go to different stores in the neighborhood, and I eat at a variety of Forest Hills restaurants.

Do you know who your donor is?
Nope. Because of various precautions and privacy rules, patients must wait at least a year before they can find out who their donor is - and that's only if the donor doesn't choose to remain anonymous. In the meantime, though, the marrow bank will pass along messages, so I am in the process of trying to come up with a "thank you" that adequately covers someone literally saving my life. I won't be able to sign the note, nor will I know who it is sent to, but at least I'll know that he realizes I appreciate what he did.

How do you look now?
My hair is growing back, but much thinner than before. As Allison pointed out when she visited from Nashville, it looks a little like baby hair. It's also at a really awkward length, but it's too soon to think about getting it cut. I'm slowly regaining weight. I'm also going through yet another round of puberty - my face is very pimply. I'm sure that most of this will change as the nasty chemicals leave my body.

Are there any lasting effects of the brain chemo?
I still have a tendency to veer to the right when I walk, especially when I'm walking long distances. This can easily be helped by having someone walk on the side I'm veering toward, because it forces me to concentrate on trying to walk straight. At times, it seems as if my thought process isn't exactly the same as it used to be. Instances of struggling for a word are much more frequent now than they were before my illness. Theoretically, these symptoms should go away with the passage of time. Until then, people I'm having a conversation with should simply shout out words they think I might be trying to think of. It's a fun game, and winners get a pat on the head!

What do you do to fill your days?
I wish I could say that I'm working on the great American novel or something, but alas, that's not the case. I watch TV shows on DVD, write reviews, and keep the Web site updated. I take at least two 20 minute power naps a day - once in the morning, and once in the afternoon. Each night we try to go out for at least a 30 minute walk. I'm still avoiding daytime TV.except for Judge Judy which I compulsively watch every day. I'm still not sure why I like watching Judge Judy, unless it's because she's crabbier than I am. I have to say that even though I haven't been doing all that much, I'm rarely bored, and the days pass fairly quickly.

When will you be able to go back to work?
I won't be able to return to work full time until mid- to late-summer after the pills that suppress my immune system are discontinued. Until those pills are stopped, my subway riding is still restricted. My doctor says that I can occasionally ride the subway now if I absolutely have to, but I can't ride it during rush hours when the cars are crowded.

When can people come for visits?
I am happy to report that the dam has broken and we will be having several visitors from out of town throughout the month. Kay Daly will be visiting from Chicago in a few weeks. Hopefully her hubby Eamon will be able to get off of work and come, too. Billie and Baby Ian will be here from Rochester for Memorial Day where they will be joined by Katie (who is coming in from Chicago). A good time will be had by all.except for whichever unlucky soul is stuck sleeping on the futon, which I think is about to collapse. As for people who live in the NYC area, since I only have checkups once a month now, I'm available for lunch and other daytime get-togethers much more frequently now provided you want to venture to the Hills.

What do you have to be careful of?
Mainly I have to be on the lookout for signs of Graft vs. Host disease. This includes skin rashes, fever, mouth sores, and other stuff. I also have to avoid the sun because not only is my skin sensitive from the medications I'm taking, but getting even the slightest sunburn might trigger GVHD. I hate the sun, so that doesn't really bother. Now if I had to avoid showers, that would be another story...

What are your plans for summer and beyond?
I'm hoping to schedule a visit to LA at some point, but that can't happen until my restrictions are lifted. If I can't ride the subway, I really can't ride in an airplane. We are also losing our apartment at the end of November - our landlord has decided to sell it. We've been visiting open houses in anticipation of buying an apartment rather than continuing to rent. Scary, but fun!

Well, that's about it. I know, I know - the top ten questions include only nine questions. One of the questions on the list was answered through several of the other questions, so I skipped it. Hopefully you won't feel too cheated!

April 26, 2006
My monthly checkup was yesterday, and the doctors are pleased with my progress. Not pleased enough to take me off of my immunosuppressants, though. I'm going to have another bone marrow biopsy in June and then they'll reconsider my medications.

As a matter of fact, my pill intake is actually being increased. This is a good thing, though. Rather than receiving an IV drip of medicine every few weeks as an infection preventative, I'll be taking a pill three times a week.

My next appointment is with the neurologist on May 9th. I may have an appointment with an eye doctor before then, though, because my eyes are producing an excessive amount of gunk. This could actually be a symptom of GVH, or it could just be that my eyes are producing an excessive amount of gunk.

Tune in next week for a list of the top ten questions people have been asking about me and my health.I might even answer them, too!

April 19, 2006
My mom is heading back to LA as I type this. She arrived Friday afternoon with my Aunt Joyce and her friends Edwina and Christine. After they checked into their hotel, Chris escorted them to Forest Hills and we all went out to dinner. Saturday afternoon they saw Jersey Boys (the Frankie Valli and the Four Seasons musical). Afterwards, Chris went into the city and played tour guide, taking them on a nighttime boat cruise around Manhattan. Easter Sunday we took a car service into the city and met them at the Metropolitan Museum of Art. The Met is huge, and we saw about .001% of it before they decided that they were museumed out. Monday they went on a bus tour of the city. Yesterday my mom came out to the Hills to spend the night. We ate at her favorite joint - Johnny Rockets - and then settled in to watch American Idol. Yes, folks - it was as if nothing had changed.

And that's about it. Everything is going well, and I'm feeling fine. Earlier in the week we even managed to go on our pre-leukemia 3.5 mile walk. Physically, it was no problem at all. I've grown impatient, though, and the walk felt really long. I guess I'll just have to get re-accustomed to it. After all, if I can spend five weeks in a hospital room smaller than most bathrooms, I should have no problem walking for an hour every night!

April 13, 2006
Sorry to post this week's update so late.I've just been trying to figure out what I could possibly update everyone on. I can only write about my hair so many times! I'm feeling great, all is well, and I've still got two more weeks before my next checkup. Plus my mom arrives tomorrow for a little Spring Break visit. I'm sure THAT will develop some comments for the update.but you'll have to wait until next week to find out.

April 5, 2006
Not much to report this week since my next visit to the doctor won't happen until the 25th. I'm feeling okay, and I've been trying to get out a little more. Last weekend we walked to Target (about a mile and a half away) and did some shopping. I even managed to do our taxes without screaming. This year I decided to use a computer tax program (purchased on my trip to Target). It worked well, but seemed to take longer than just doing it on paper.

Over the weekend we also went out to dinner with Chris' cousin Kerri and her boyfriend Sam. We had a great time, especially since we hadn't seen them in so long. I forgot to mention it last time, but according to the neurologist, I've gained 4 more pounds. Soon I'll be my usual, massive self!

Chris left this morning on a business trip and will return Friday night. This will be the longest I've been in the apartment alone in over a year. Hopefully nothing I need has been moved to too high a shelf!

That's it for now. Now that it's past 11AM, I guess I need to get dressed and get my day started!

March 29, 2006
I'm back from my visit to the neurologist and I have to say this was my second appointment this week with nothing but good news. He says that my reflexes and other reactions show a marked improvement over my last visit, meaning that my dizziness and unsteadiness probably were caused by the brain chemo and should go away with time. I have a follow up visit with him in six weeks.

My appointment was pretty early and we were done by 10:30, so we decided to walk downtown and visit Dr. Levine, my doctor from Lenox Hill. We were able to talk to both Dr. Levine and her assistant, Adrienne. It was great to see them again, even if it was only for a few minutes. Dr. Levine is a terrific doctor, and I don't think I'd be where I am today if I hadn't started off with her.

Well, that's about it for this time. If you hear screaming over the next few days, it's because I've finally decided to tackle this year's taxes. Wish me luck!

March 28, 2006
Here's a quick update on what we found out at my regular checkup today. The bone marrow biopsy they took a few weeks back came out perfectly clean - no sign of leukemia, no chromosomal abnormalities, and I'm now 100% donor. This news is so positive that my checkup schedule has now been adjusted to once a month. ONCE A MONTH! I don't have to go back until the end of April!

The immunosuppressants I'm taking have been reduced once again and might be cut out entirely after my next visit. Once that's done, I'll be able to take the subway again. The countdown begins!

Here's an interesting factoid: my blood type will switch to whatever my donor's is, and if, for example, he has bad seasonal allergies, I can look forward to inheriting that, too. Weird, huh?

I had an appointment with the neurologist today, but it was postponed until tomorrow. I don't predict that it will be anything exciting, but I'll post news about what happens as soon as I can.

March 22, 2006
Hello! It's another week with no scheduled visits to the doctor. And that, of course, means another week of making up stuff for the update so that you'll know I'm still alive. What fun!

Allison Dillon came over from Nashville for a visit this weekend. We didn't do very much beyond going out to dinner on Saturday night. The three of us played videogames, watched TV, and caught up with each other. Allison mostly spent time napping on the loveseat. At last, someone who has less energy than I do!

On the hair front, my hair is growing back a few shades lighter than it was before. It's also much, much thinner. I'm still not sure what I'm going to do with it, but it's looking wilder than ever.

Next week I have two appointments on Tuesday. In the morning, I have a follow up visit with the neurologist. In the afternoon, I have my usual checkup. More then!

March 15, 2006
Hello everyone! I had a checkup yesterday, so it's time for another exciting update. I should warn you, though, that most of this information comes from Chris. I don't really remember much about the visit. You'll see why in a minute.

My appointment yesterday was about two main things: the IV medication and a bone marrow biopsy. The IV medication came first. As I may have mentioned before, they have started giving me a shot of Benadryl before administering the IV meds because of a weird allergic reaction my body had during my third treatment. Benadryl helps to ease allergic reactions, but it also leaves me a little sleepy. Sometimes I fight it off and stay awake, but yesterday I just gave in and let it run its course.

Next up was a routine bone marrow biopsy. Before that, I was given a muscle relaxant to help with the pain of having a needle pushed into my tailbone. By this point, a Mack truck could have crashed into my tailbone and I wouldn't have known. The biopsy was uneventful and we should have the results during our next visit two weeks from yesterday.

My drug-addled brain doesn't remember many specifics about the visit, but here are the highlights from Chris:
-My pill intake has gone down again. Cellcept, an immunosuppressant, has been decreased from one large pill and one small pill twice a day to one large pill twice a day. This is a good sign because it shows that they believe my donor marrow is taking over.
-The brain fluid sample taken during my last visit came out totally clear.
-My bones seem to be really healthy. Chemo treatments can leave patients with soft, spongy bones. The doctor can tell while performing the biopsy that my bones have remained strong and healthy.
-Unfortunately, I am still unable to take the subway until I am no longer on immunosuppressants. Being able to ride the subway is my next big step as it will give me a lot more freedom.

Just to give an idea of how fuzzy my brain was yesterday, I don't remember leaving the doctors' office, I don't remember the cab ride home (with the exception of a few hallucinations I had about eating - I would wake up in the cab chewing), and I don't remember actually eating dinner. It's like "The Lost Appointment"!

Well, let me run. I feel a bit hung over today and would like nothing more than to climb onto the couch and take a nap. Again.

March 8, 2006
Not much to report this week - no visit to the doctor, no major problems. I'm still a little congested and my neck hurts a little (I must have slept on it funny), but otherwise all is well.

That isn't to say that the week has been uneventful. Small events, but events nonetheless. Saturday night we went out to dinner again, this time to a Mexican restaurant. We're also trying - weather permitting - to go out for a walk every night. I used to walk three and a half miles every day but obviously haven't been able to for quite some time. Hopefully I'll be able to work my way up to doing that again.

That's about it. Told you there wasn't much to report this week!

March 1, 2006
Hi all! Here is the weekly update. Sorry it's a little late, but I had a million things to do today.and of course I haven't done any of it yet. Oh well. I'm a shut-in - time has no meaning to me.

Yesterday's trip to the doctor was uneventful. I received my IV medication and a fluid sample was taken from the port in my head. Either I was too hopped up on Benadryl or the doctor was a bit unclear about what I can expect over the next few months test wise. For example, she said that in addition to taking samples from my brain, they would need to do spinal taps to get even more fluid samples. She couldn't really express (or I couldn't really understand) what kind of schedule that would be on. I guess they want to maintain a sense of surprise.

We didn't get to celebrate Mardi Gras in our usual haunt this year, but on Saturday we went out to dinner in Forest Hills for the first time in months. I walked all the way there (ten blocks, the equivalent of one subway stop), ate everything that I could, and then walked home (with a side trip to Walgreens where I browsed the aisles for a while). Surprisingly, it wasn't tiring at all. Actually, I was invigorated. Hopefully the weather will cooperate and I'll be able to get out and take more walks. (Literally five minutes after we got home Saturday night, the wind picked up and the temperature dropped, conditions we are still putting up with.)

For those of you with strong imaginations, I just want to clarify last week's update by saying that I do NOT have a Mohawk. If it amuses you to think of me with a Mohawk, however, then be my guest. I wouldn't want to ruin your fun!

February 22, 2006
I just want to remind everyone that I didn't have a checkup this week since we've switched to an every-other-week schedule. Because of this, I don't really have much of an update, but here goes:

I have about an inch of hair on top of my head. It sticks straight up, so it looks a little strange. For some reason, the hair on the sides of my head isn't growing as quickly, making me look even weirder.

In a delayed reaction to the chemo, I've lost most of my eyebrows again. My eyelashes are thinning, too. I haven't had chemo in a while, but I remember from my initial treatments last year at Lennox Hill that it would often take up to four weeks for my hair to begin falling out.

I'm feeling a bit tired and I'm congested again. Otherwise, I feel fine. I've taken my last steroid pill, and my appetite is slowly returning.

See, I told you it wasn't very exciting! More next week after my appointment...

February 15, 2006
Yesterday I had not one but two visits with doctors. Don't be jealous! The first was with a neuro-oncologist. Apparently my doctor forgot to tell me that I was being sent to this guy - I didn't find out until Friday when they called to confirm my appointment. He asked a bunch of questions about my dizziness and then ran some tests - not tests involving machines, but things like having to touch my finger to my nose and then to his moving finger. The most difficult was having to walk a straight line heel to toe. I felt as if I was walking on a tightrope and that I might fall off at any second. Hopefully I won't have to take a sobriety test anytime soon! After all of that, he basically said the same thing as my doctor: the chemo is causing the problem and I should stop receiving it. He also said that any damage done so far is minor and will hopefully reverse itself.

At one point, he took my head in his hands and started to squeeze it in various places, sort of like someone trying to pick a ripe melon at the supermarket. Chris was horrified to see that when he pressed on my port, it depressed like a cheap rubber ball. We had always assumed it was hard. I've touched it before, of course, but it never dawned on me to press it. I couldn't resist trying it afterwards, and the port is indeed soft. Who knew?

Because that appointment was in the morning and the appointment with my regular doctor was in the afternoon, we decided to go out to lunch. This was a significant milestone because it marked the first time I'd eaten in a restaurant since September. We went to this great place near the hospital called Sarabeth's. As we walked in, I noticed someone who looked awfully familiar. Then it came to me - he was that terrible doctor who had me overdose on a cancer drug that left me with blinding headaches and a bloodcount that made it seem like I'd had a relapse last spring. You can't escape the past, I guess!

I had French toast, by the way.

The visit with my regular doctor was uneventful. The steroid I'm taking is being reduced once again, this time from half a pill daily to half a pill every other day. I'll stop taking it altogether next week. That would be next week WHEN I DON'T HAVE TO GO TO THE DOCTOR! Our new schedule of going in every two weeks starts now.

For the past few weeks my appetite has been off, I've been overly tired, and I haven't felt as good as I have in the past. As it turns out, the doctor says this is because we're cutting out the steroid. Apparently it's extremely common. If only they'd remember to tell me about these things BEFORE they happen.

Well, for the five of you who haven't fallen asleep by now, let me sign off. I have to get dressed and start the day. (In the last sentence, "start the day" means "turn on the DVD player.")

February 8, 2006
Howdy! Another week, another round of good news. Monday I went in for an MRI and yesterday I had a regular weekly checkup. Here's what I found out:

The MRI shows inflammation in my brain, but to a degree that is no better or worse than in my last MRI (back in December). Both the radiologist and my doctor feel that this is probably due to the chemo, so now we're definitely going to stop injecting toxic chemicals into my head. In a few months, we'll do another MRI to see if there is any improvement. Apparently, leukemia can also somehow manifest itself in MRI scans, but my scan was leukemia-free.

Since I'm not going to receive chemo, my appointments will now decrease from once a week to once every two weeks. Needless to say, this is terrific since it will save both time and money.

My pill intake has been decreased again. The steroid I take has been reduced from a high of four a day to one-half a pill. The giant potassium pills have also been discontinued. These pills were so huge that I literally choked on them each time I took them for the first month. Now I can swallow them like a pro, but I don't need to!

I no longer have to wear a surgical mask in public. The doctors also suggested that I try to get out more.go to the store, go to the movies, etc. I can even eat certain dishes at trusted restaurants! I still can't ride the subway, though, so I'm limited to Forest Hills unless I want to spring for a $40 car ride to Manhattan.

And that's it! I am especially happy that we've received good news as we approach the one year anniversary of my initial diagnosis this weekend. Thank you for your support over the last year. I couldn't have done it without you!

February 1, 2006
Another week, another visit to the doctor! My test results are back, and the news is good. The fluid taken from my head is clear with absolutely no evidence of leukemia cells. The same is true of my bone marrow biopsy. I now have 95% donor marrow. This is lower than the last time they checked, but it is still well within the acceptable range. The percentage should also increase as my pill intake decreases. (The pills prevent graft vs. host disease, but a side effect is that they also strengthen my marrow a bit.)

Because my brain fluid is clear (and due to my dizziness), it has been decided that we're going to discontinue my brain chemo for the time being. I have an MRI scheduled for Monday just to make sure that my head looks okay. As I've said before, the doctors want to make sure that they get rid of the leukemia in my brain fluid while also avoiding toxic brain damage. Since there are currently no signs of the leukemia and the chemo is merely precautionary, they feel that it is okay to hold off giving it to me. I may get the chemo again in the future based on the results of the MRI and subsequent fluid tests. As of now, though, I get a break!

My mom is all packed and ready to go. Well, not exactly ready to go, but her plane leaves at 2:45 today no matter what. We'll miss her, but it's time for her to get back to some sort of normal life.

More later!

January 30, 2006
Since I am heading back to Louisiana Wednesday, I'd like to express my gratitude to everyone who made my stay in New York a little easier - the blood drive, the prayers, the money, the Transplant Living Center, the hotel stay, the frozen meals, the goodie packages, the cards, the letters, the emails, the phone cards and phone calls.

With love, I would especially like to thank Chris, Nicole, Kelly, and Mickey for spending many hours with me at Mount Sinai.

Once again, thank you for helping my family through this difficult time.

Love to all,
Gail

January 25, 2006
Welcome to another of our Wednesday updates! Last week was a very tiring one for me. I took more naps than I can even remember. The doctors say that fatigue is normal.and that it can last for years after treatment. I also experienced another round of "drunken walking" where I have difficulty walking in a straight line. In the past, this has happened for a day or so before clearing up, but this time we are at day four and counting.

The doctors really don't have an explanation for lack of balance. They do realize, however, that there is a fine line between putting chemo into my head to prevent the return of leukemia and, in the process, possibly causing neurological damage. Just to be safe, they decided not to give my scheduled chemo yesterday. They did take a brain fluid sample, however, and would like to schedule me for my 300th MRI.

Yesterday I also had my monthly bone marrow biopsy. My last one was unusually traumatic, so I asked for a sedative this time around. The test itself wasn't so bad, but now my back is a little sore. That should go away in a few days, though.

Big changes are about to happen around here! If all goes as planned, my mom is heading back to Louisiana one week from today. This could change depending on what becomes of my dizziness, but right now it's a go. This will be a big thing for us to get used to, but I also think that it will be good for us, especially in making me a little more independent.

Well, that's it. Check back next week for more exciting adventures in Cancerland!

January 18, 2006
Welcome to the weekly update! Not much new to report here.which is a good thing. At my checkup yesterday, I received an IV of medicine and learned that all of the tests I took last week came out well. Unfortunately, I also learned that next week I'll get my monthly bone marrow biopsy, but I requested a sedative beforehand, so it shouldn't be as bad as it was the last time.

My pill intake has been reduced slightly - I'm taking one less steroid each day. Not a big change, but still welcome.

I also discovered that my food options have grown. I can pretty much have anything I want - including fresh fruit and salad - as long as it is prepared by us at home. I still can't have takeout or restaurant food, but at least this gives me more options.

Finally, this weekend we saw a bunch of movies on DVD. For those of you who need rental ideas:
The Dukes of Hazard: Even worse than you'd think.
Red Eye: Not bad, but not great.
The Wild Parrots of Telegraph Hill: Highly recommended.
Grizzly Man: Frustrating, mostly because the guy the documentary is about is totally insane.

So, that's it! More next week.

January 11, 2006
Time for another of our weekly updates! Yesterday's checkup was uneventful.except for the fact that thanks to some sort of mix-up, I ended up getting the nasty chemo rather than the more benign one I was originally scheduled to receive. This didn't really present any major problems, especially since the preparatory drugs they give me seem to help my body tolerate the stronger chemo.

I still have a cough and stuffy nose. The doctors will keep an eye on it, but there still doesn't seem to be anything to worry about, especially since my temperature is under control.

My appetite - especially for junk food - is doing well. I don't really think I'm gaining weight, but at least I'm maintaining my weight. We've even purchased a Crock Pot so that we can expand the kinds of foods we cook. See what fun you can have when you're an invalid?

More later!

January 4, 2006
Happy New Year! I had my first checkup of 2006 yesterday. Not much to report. I received an IV containing the yellow finger paint substitute, and that's about it. All of the tests I took over the past few weeks (bone marrow, MRI, etc.) came back okay. I do have a cough and stuffy nose, but an x-ray revealed that my lungs are okay, so there's really nothing to worry about. My next appointment is Tuesday when I'll get more chemo.

My hair is slowly growing back. Oddly enough, it's growing faster on my right side than my left. I sort of look like I have a Marine's haircut.not that anyone would be dumb enough to confuse my battered, skinny body with a Marine's. I would actually keep my hair short - I think it looks okay and it's really simple to care for - but hesitate to do so because of the port on top of my head. It's impossible for me to describe it in a way that makes sense. Just imagine someone took a ping pong ball and shoved it halfway through my temple and you have the general idea.

And that's it! There may not be another update until my appointment next week, so be patient. Here's to a healthy and happy 2006!

December 28, 2005
Late Merry Christmas and early Happy New Year! Sorry that these updates have been spotty lately. I always seem to remember that I need to do one immediately after turning off the computer. There hasn't been much to report lately, though.

I cancelled my checkup last Friday because of concerns about the transit strike. As it turns out, the strike ended and I could have gone, but who's complaining?

I had an appointment yesterday where I received more of the nasty brain chemo. So far, so good - I haven't had any bad stomach problems. My next appointment is next Tuesday when I'll receive an IV of medication.

Chris has been home in Rochester for the past week for the holiday and is returning tonight. I've been cooped up in the apartment with my mom for the past week. The weather here has been strange - hot, cold, rainy, foggy, snowy. It's something different every day. Not that I planned on scaling Mt. Everest or anything. On Christmas, though, we did walk a few blocks to a newsstand so that I could get the Sunday paper - one of my few ventures out of the house that didn't involve going to see a doctor!

Decmber 20, 2005
(Excerpted from an earlier email by Chris at 9 pm)
Well, amidst all of chaos and confusion in our fair city, things have managed to work out nicely, and I wanted to let you all know.

Last night, anticipating that there would be subway troubles, Gail and I decided to wait at the hospital with Jonathan--who was supposed to be getting released today--until the announcement was made at 12:01 am of whether or not there would be a strike. 12:01 came and went with nary a peep from our good friends at the MTA. So Gail curled up in a chair and I headed off to the Chateau d'Roberts on 36th Street. Proprietress Nicole Roberts welcomed me with an electric blanket, a pile of fresh and thirsty towels, miniature toiletries, and there was, in fact, a mint on my pillow.

As I'm sure you all know, at 3:00 am, the MTA went on strike, throwing the Big Apple into one of its perennial crises. For those of you who don't live here, I'm sure the thought is, "Well, can't they just take a cab to get Jonathan home?" What you must keep in mind, though, is that there are SEVEN MILLION other people (literally) who are thinking of doing the same thing to go about their business. At 8:30 am, word arrived from Jonathan's doctors that he WAS going to be released this morning. So I walked from 36th and 3rd Avenue to Mt. Sinai, at Madison and 101st. Anyway you slice it, that's what they called in the Old West "a fur piece." I walked up Madison Avenue, which is closed to all but emergency vehicles, and it was very surreal and spooky. I passed Tom Brokaw, chatting away on his cell phone and trying to figure out how he was going to get his family to the airport tonight.

Thankfully, Jonathan's boss Mickey ordered a car for us last night for 11:30 am this morning, not knowing when or if he was going to get released. As if by magic, the nurses disconnected Jonathan's IV and sent him packing right at 11:30. The car--which had been held up in traffic--arrived at high noon, and we hopped in. Complicating matters is the fact that both 5th Avenue and Madison Avenue--the streets on either side of the hospital--are closed. . but BELOW 96th Street, and the hospital is just ABOVE 96th Street. Whew. The ride back to Forest Hills was cinchy. . . there was hardly any traffic. But the traffic coming into Manhattan is BEYOND BELIEF. The expressway was backed up from La Guardia Airport to the Triboro Bridge. . .which is a MIGHTY fur piece. So we are all home safe and sound.

After this insane year, it's only appropriate that today was my birthday. . .but the best present is that Jonathan is HOME and feeling fine. Joy to the world. And God bless us every one.

December 18, 2005
(Written by Chris at 11:15 pm)
So as many of you know, last week Jonathan was not feeling all that great, and he had a slight infection. By Thursday morning, his temperature was up to 101.3, above the 100.5 "red alert" level. Late Thursday afternoon, Dr. Isola called and said he wanted Jonathan to go to the emergency room. So after a long evening and night, he was admitted to the hospital in the wee hours of Friday morning.

He was pretty frustrated and disappointed, but the good news is that after a day on antibiotics, his fever and the symptoms of his infection mostly disappeared. He hasn't really felt all that bad. We've see the North American chapter of the Jonathan Boudreaux International Fan Club, since all of the nurses were thrilled to see him (and I suppose Gail and I) again. The nurses have told us that they are very impressed that he's managed to stay out so long. Apparently, most people who have a transplant are back in the hospital within a week or two. . .and Jonathan was out for a month and a week.

The prevailing thought is that his fever was being caused by his graft-versus-host disease coming back a little too strongly. The doctors wanted it to come back a little, because it can be very effective at wiping out any hidden leukemia cells. But since it gave him a fever, they are putting him back on steroids and some other drugs to make his new bone marrow stop going on the warpath.

Since his fever and the infection appear to be under control, we are hopeful that he will be getting out of the hospital early this week. As always, we'll keep you posted.



December 14, 2005
Hello, all! We spent most of yesterday afternoon waiting to see various doctors. I received brain chemo - the old kind, not the one that made me so sick a few weeks back. They've also decided to reduce my dosage in an attempt to prevent all of my weird side effects. Next Tuesday I'll be getting a bone marrow biopsy, and more chemo the following week.

Afterwards, we went to my MRI appointment. We were 20 minutes late, but the MRI department was running 2 hours late anyway, so it didn't matter much. No word as to when we might receive the results, but my 300 other MRIs have never turned up anything, so I'm not expecting anything this time around.

My skin looks terrible right now because of a mild case of graft vs. host disease. It's dry, brownish, peeling, and inflamed. I'm also on an antibiotic now because I have a slight infection. I think I took 4 naps today. Otherwise, everything is great!

For those of you who may not have heard, my father was in a racecar accident Friday night. The car flipped, caught fire, and he had to be pulled out. He was well enough that the hospital did not keep him, but he is still very sore.

December 6, 2005
Hello everyone! I went in for my appointment today. First off, I was in and out in about an hour, which is perhaps the most amazing thing ever. Then the doctor told me that we would be taking a break from chemo this week. My body's reaction was so violent to the chemo last week that they have decided to give me a break.

Lately I've been noticing a rash (it's not too gross, so keep reading) on my hands and legs. Frankly, I assumed that the itching and rash on my legs mostly had to do with my sitting on the sofa for most of the day. As it turns out, though, this is the start of a mild case of graft vs. host disease. This is a good thing as it will hopefully increase my percentage of donor marrow from 99% to 100%. In the meantime, however, my skin is so dry I look like some kind of lizard creature, and I'm extremely itchy.

I did have another one of those brain freezes Sunday night. I'm going to have an MRI next Tuesday eve around 4.immediately after getting more chemo. Until then, I'm free to enjoy my week. I can't imagine anything happening between now and then, so we may not post another update until next week. Enjoy your week!

December 2, 2005
(Written by Chris at 8:37 pm EST)
Did you feel a slight tremor in the earth today? That's because we let out a gigantic sigh of relief this morning. Those five "slightly abnormal cells" that the doctors discovered Monday were more than a bit worrisome, because there was a chance they could have signaled a return of the leukemia. Today, we got the cytology report back, and the weirdo cells were NOT malignant. So that was some pretty great news. They will be continuing with the cranial chemotherapy as planned, as a preventive measure. The only other development today was that the doctor ordered Jonathan to increase his intake of food, since he really, really needs to put on some weight. So he had pancakes for lunch and pizza for dinner. We'll fatten him up yet. Hope you all have a great weekend and get lots of Christmas prep done. Oh, and next week. . .remember Pearl Harbor. . ..!

November 30, 2005
Hello everyone! Here is a quick update on what we discovered at my appointment yesterday. The preliminary look at the fluid from my spinal tap shows the presence of five slightly abnormal cells. This isn't necessarily unusual. It does change the plan slightly, though. Originally, I was going to receive the exact same chemo each week. Now it will be alternated with a chemo that isn't normally used with AML. The theory is that if there is any leukemia in my brain or spine, this new chemo will help shock it out of existence.

I'm also not 100% donor - I'm 99%. Apparently, this amount can move up and down. Part of the reason I'm being weaned off of more and more pills is to encourage my body to develop a mild case of graft vs. host disease. This would help the donor marrow to knock out the rest of my marrow.

All in all, I'm feeling fine, although not as good as last week. I'm tired, my stomach is a little funky, and I have a near constant headache. I'm still confident that things will get better, though.

November 28, 2005
(Written by Chris at 9:08 pm EST)
Well, after our very uneventful and quiet week, we have a new mystery to deal with. On Saturday night, Jonathan had a brief (30 minute) period where he was having some sort of brain-related event. It was NOT a seizure, it was NOT blindness, it was a brief spell where he had difficulty putting his thoughts into words. He was perfectly lucid, he just had a tough time articulating his thoughts (for example, when he took his temperature, he kept saying that it was "seventy-seven point nine," when he knew perfectly well that it was "ninety seven point nine." He just couldn't get the right words out. This oddity lasted for only a short period and then went away just as suddenly as it appeared.

At the doctor today, we were informed that last week's brain fluid test came back perfectly clear and normal, but Dr. Isola was concerned about the "Saturday night spell." So he opted to do a spinal tap today, since sometimes Jonathan has different results from the fluid in his head than from the fluid in his spine (in theory, it's all the same stuff, but who knows). Tomorrow (Tuesday), he will go back to the doctor for the chemo he couldn't get today (because of the spinal tap), and to hear if there's anything awry with his spinal fluid. Needless to say, it was kind of a disappointing day (especially coming after a nice week like we had last week). We will keep you posted.

November 27, 2005
I hope that your Thanksgiving was as nice as ours. I have so much to be thankful for this year, from the anonymous donor who is helping to save my life to the unending support of my family and friends. I am truly grateful to all of you.

My mother returns to NYC tonight (Sunday), and I have a doctor's appointment tomorrow (the first in a week). We'll let you know how that turns out.

Note from Chris:
Hi all. We've had a really relaxing and noneventful week. . .just the way we like 'em. It was an incredible treat to not have to deal with trips back and forth to the doctor, or the hospital. Little to no medical drama is exactly what we need. Not having to deal with the reality of work this week was also nice. Jonathan has really continued to improve. While it's difficult to see changes from day to day, he is really making progress when you look at the big picture. His appetite is improving (as is his ability to keep food and medicine in his system). He has been plowing his way through Thanksgiving leftovers since Thursday, and now makes daily trips down and up the six flights of stairs in our building. It will be nice to have Gail back as we enter the next chapter of "early recovery."

November 21, 2005
(Written by Chris at 5:30 pm EST)
Well, things must be getting better: Jonathan went to the doctor this morning and doesn't have to go back for a full week. Whether this is a testament to the fact that he is bouncing back, or that the doctors want to go shopping on Black Friday, we don't know.

At any rate, he is doing pretty well. Today, the doctors eliminated a selection of pills from his diet, as well as the dreaded yellow fingerpaint. It was also revealed to us that his bone marrow is now officially 100% donor marrow. . .so his old-school, nasty, dirty, leukemia-infested bone marrow is, as they say, gone with the wind. He got another dose of cranial chemo today, and seems to be tolerating it fairly well (knock on wood several times).

In other news, the secret is now out. . .Jonathan's mom went back to Louisiana yesterday for the holiday and a weeklong break from her Florence Nightingale duties. I've taken a few days off from work, and Jonathan and I are looking forward to a very quiet, noneventful week at home. We've laid in our supplies for Thanksgiving dinner because it's supposed to be miserable. . .and possibly snowing. . .by Thanksgiving Day. We will watch It's a Wonderful Life and you can bet that the Christmas tree will be up and decorated by sundown Friday.

So have a very happy Thanksgiving. We all sure have a lot to be extra thankful for this year,

November 18, 2005
(Written by Chris at 8 pm EST)
At long last, we've managed to get some really encouraging news. Today, Jonathan had his second weekly appointment. The initial results of BOTH this week's bone marrow biopsy and the brain fluid test were "clear as a bell" and revealed no visible traces of leukemia. We still have to wait for the results of the in-depth cytology report, but this is of course really, really happy news.

As we reported earlier in the week, the doctors will be continuing the cranial chemotherapy for several more weeks, so that they can be as certain as possible that the leukemia is totally gone. And now, because he is switching from one type of dose to another, he will be receiving it every week, which is not going to be fun but is, of course, necessary. The chemo tends to make him even more tired than usual, and also can give him a nagging headache. The transplant/engraftment process itself is going very well. . . today the doctor said that Jonathan's blood counts are "perfect." No infections, no fevers, no rashes. . .at last, we get to breathe a little sigh of relief today.

That being said, Jonathan's got a lot of stuff to work on. He is still taking a dizzying amount of medicine, and it is quite a challenge for him to get it all in and keep it all down. The fatigue is still pretty extreme. One of his liquid medicines, an anti-pneumonia drug, looks and smells just like bright yellow finger paint. And he still is trying to get in all of his fluids and food. To say that he needs to get some meat on his bones is an understatement. But he is very determined and this week began working on his DVD reviews again. A few more steps on the road to recovery!

November 14, 2005
(Written by Chris at 7:30 EST)
Hi all, it's me again. Since we have been a little spotty with posting updates, I'd figure I'd let you all know what's up.

Today was a "milestone day:" Jonathan has reached day +30 after the transplant. It's an encouraging sign that he's made it this far and that he's out of the hospital for it.

Today he had an appointment with Dr. Isola and his minions. He got a bone marrow biopsy, just to make sure the leukemia isn't in his brand-new bone marrow (they don't think it is, they just have to closely monitor the situation). As a matter of fact, his blood is full of healthy, strong white blood cells. . .the adopted cells from his donor. They also withdrew more brain fluid for testing and gave him another shot of chemo in the head. We received some clarification on the cranial chemo. . .he will continue to receive it until he has several "all clear" tests on his brain fluid. Even the tiniest bit of leftover leukemia there would be disastrous news. So the chemo will continue for several more weeks.

That being said, he is in the midst of "early recovery." I think we all intellectually understood that the road to recovery. . .which can take six months to a year. . .would be long and hard, but now that we're in it, we can appreciate why it takes six months to a year. Jonathan is VERY wiped out. He is extremely, shockingly tired, and he spends most of his time trying to eat and trying to take the horrifying amount of medication he's been prescribed. . .with varying results. I counted up the other day, and he is taking 27 pills a day, plus liquid medicines, plus oral rinses, plus lotions and skin creams. . .it's quite a regimen for him to keep up with. It is not easy, but he is plugging away, and trying to get all of his medicine--as well as necesary food and fluids--into his system. It's not hard to see why this takes a year now.

He's not up to responding to emails yet, but if you'd like to send him one (jonathan@tvdvdreviewscom), he'd love to hear from you.

As always, we will keep you posted.

November 11, 2005
Just a quick update to let you know that all is well. I saw my doctor this morning, and things seem to be progressing nicely. On Monday, I'll receive more chemo to my head. It looks as if I'll receive brain chemo for the foreseeable future. If I relapse, it is likely to stem from my head or spinal column, so they want to make sure to knock it out.

I'm still exhausted, it's hard for me to eat and keep food down, and I take a huge number of pills each day. I'm trying my best, though, and will hopefully make gains every day.

November 9, 2005
As of 4:30 yesterday, I am officially home. I'll keep this brief because I'm still exhausted (and more than a little daunted by the number of pills I have to take each day), but I wanted to share the great news!

November 8, 2005
(Written by Chris at 9:00 am EST)
Ladies and gentlemen, the plastic bubble has officially burst. We received word a short time ago that Jonathan will be released from the Bone Marrow Transplant Unit later today. The warden left her ring of keys on the table by accident, and we will be stealing, stealthily, like thieves in the night.

Seriously, though, Jonathan is getting discharged today. In the grand tradition of all things Mt. Sinai, it will probably take until three am tomorrow, since we have to have release meetings with doctors, nurses, dieticians, visiting nurses, nurse practicioners, the lady who mops the bubble every morning, Mayor Bloomberg, and any one else who happens to wander by. Last chance to call the hotline with your well wishes at (212) 241-2602. . .it will be getting disconnected later today.

Jonathan's dad is going back to Louisiana today, and Gail will be getting the rest of our debris out of the TLC, and then we will be AT HOME in our spic-and-span, sterilized apartment. He will be having two visits with the transplant team a week for the next several weeks, and starting his long road to recovery.

Never fear, we will continue to post Web updates to keep you in the loop.

November 7, 2005
(Written by Chris at 9:00 am EST)
With the exception of a tempemental stomach, Jonathan had a good day yesterday, and he's feeling fairly decent this morning. The doctor just came in and she is "reviewing his medications" to see if he is taking and tolerating all of his necessary medicine. If he is, he will be released from the hospital today. . .which, as you can imagine, is a pretty exciting thought for him. So we shall see. It's quite unbelievable that after all he's been through (and so recently) his time in the bubble may be coming to an end so soon,

Allison and I spent the day yesterday sterilizing the apartment. A second cleaning crew arrives this afternoon to finish the job, but yesterday we CLEANED. We washed the rugs and the drapes and throws and blankets and cleaned corners and crevices that haven't seen the light of day since the Clinton administration. We met a new subspecies of animal. . .not the dust bunny, but rather the dust Tyrannosaurous Rex. But home is all set for his arrival as soon as he can get there.

I have a feeling that if he IS leaving today, it will be a day-long production number. He's going to have a strict diet to follow and enough pills to choke and army. Keep your fingers crossed and we will keep you posted.

BREAKING NEWS: The nurse practitioner just came back in, and announced that Jonathan will be leaving the hospital TOMORROW (Tuesday), barring any unforeseen disasters. He is a bit disappointed, but we would rather get him all squared away than get out of here today and be back in an ambulance tomorrow afternoon.

November 5, 2005
(Written by Chris at 8 pm EST)
Hi all. Jonathan had an ok day today. He did some more laps around the ward, did some physical therapy exercises in the bubble, sat up in the chair for the majority of the day, and did some crossword puzzles. As we speak, he is sitting with Allison and I watching bits and pieces of "I Love the 80s: 3D." We have also heard more of the rumor that he may be getting ejected from the bubble as early as Monday or Tuesday. So Allison and I will be spending the day tomorrow getting the apartment in order for painters and cleaners who are coming on Monday.

November 4, 2005
(Written by Chris at 7:30 EST)
Well, after a week of waiting for the cytology report to come back and tell us whether or not Jonathan still has leukemia in his brain, today we got our answer, which was not an answer at all. Apparently, the sample of cranial and spinal fluid that was sent to the lab didn't have enough cells in it to enable a cytogenetic analysis. So they didn't do the test, and the whole thing was a big fat stinking bust. What I would love to know is when they determined this fact. . .perhaps on n Tuesday, when we were originally supposed to get the results? Does he still have leukemia hanging around in his brain, and did it cause the seizures and blindness? Well, nobody knows, and it seems as though nobody is terribly concerned about it because they aren't going to test him again for another two weeks. In the meantime, there is still talk of him going home next week, which I think is utterly ridiculous and implausible at this point. . .especially if they don't know ANYTHING at all about what caused the seizures and blindness. But hey, what do I know? I am so tired of this place I'd like to hit it with a wrecking ball. And Jonathan is absolutely crawling the walls of the bubble.

He had an ok day today. He was extremely tired and his stomach was not happy in the late afternoon, and he's already gone to bed for the night.

Editor's Note on November 4: See? Told you the entries would be more dramatic!

November 3, 2005
(Written by Chris at 8:15 pm EST)
Still we have no &^%$#!@ test results. We were supposed to get the cytology report on Jonathan's brain and spinal fluid back on Tuesday. Now it's almost Friday. God, how I hate this hospital.

Jonathan had another pretty good day today. He ate real food and sat in the chair and did a few more laps in the hall with the physical therapist. The nurse practicioner on the floor, with whom I have an ongoing love/hate relationship, mentioned again today that he MIGHT go home next week. I guess paralyzing seizures and periodic blindness just don't cut it when it comes to "reasons to stay in the hospital." It will all, of course, hinge on what the cytology report reveals about the leukemia.

He is EXTREMELY tired of being in the hospital, and is getting very antsy to get out of here. It's almost pathological. To his parents and me, it feels like he's been in the bubble for six months, so I can't imagine how it must feel to him. So please keep calling the hotline with amusing anecdotes and tales of your day. Today we got a tasty recipe for Thanksgiving stuffing made with a case of White Castle hamburgers.

Keep up the positive thought, prayers, and good vibes, as always.

November 2, 2005
(Written by Chris at 6:15 pm EST)
The roller coaster ride continues. Today, Jonathan was up and alert and his normal cranky self. I know this sounds ridiculous, given everything he's been through, but today he ate real food, sat up in a chair most of the day, and even did some laps up and down the hall OUTSIDE of the bubble. The nurses applauded. He's like a new person.

We are STILL waiting the results of all of the various and sundry tests. The eye problem has not happened again, and neither have the seizures. The infectious disease doctors are feeling fairly confident it was not caused by an infection. So hopefully we will get some definitive news tomorrow. Now, we are really hoping that it was a reaction to all of the drugs.

November 1, 2005
(Written by Chris at 11:43 pm EST)
Tests, tests, and more tests. That's what today was all about. Jonathan had his old port taken out, and a new one installed today. That took up a good chunk of the day. This evening, we paid a visit to our favorite place. . .the MRI suite. It boggles the mind that there is anything left for them to look at in that little head of his.

The good news is that he has not had any more seizures or episodes of blindness since Sunday. Whether that is because all of the drugs they are giving him have cleared up the problem, or because the brain fluid draw and spinal tap relieved the pressure on his optic nerve, we don't know. We are still waiting for a definitive answer on their three prevailing theories. We should be getting the preliminary results of the brain fluid draw tomorrow--which will tell us if we have leukemia to deal with again. That would be a horrendous scenario.

He was much more awake and alert today, with very little forgetfulness or confusion. He is so tired of all of this and really wants out of his bubble.

In other news, Ms. Allison Dillon of Nashville, TN will be arriving on Friday for a long weekend. And Jonahan's dad has returned. It will be very good to have another set of hands, fresh eyes to the situation, and a clearly functioning brain on hand.

October 31, 2005--evening update
(Written by Chris at 8 pm EST)
Hello all. All the doctors are back at work, and we still don't have any definitive answers on what is causing his eye problems. There are three dominant theories which they are trying to sort out: 1) the leukemia may be back (or rather, it never really went away), 2) he has some sort of infection, and 3) his body is producing tiny clots which are invading his optic nerve.

Tomorrow we should know whether or not it is the leukemia. If his body responds to all of the drugs that he's getting, then they'll know it was an infection. And they are going to be doing some additional tests on his heart and carotid artery to determine if it is the blood clots.

Also tomorrow, he will be having a new port installed in his neck, because the port he has now is only good for two weeks. Also tomorrow, Dr. Isola will be determining whether or not to give him another blast of cranial chemotherapy. . .whether there are leukemia cells or not. The trick is that more chemo will contribute to the accumulating side effects of all of the other radiation and cranial chemotherapy. As of now, his short term memory is pretty much shot and he is having other, very apparent thought-processing issues.

These are not happy times, to say the least.

October 31, 2005
(Written by Chris at 12 am EST)
Well, another Halloween, and we're all a year older. The clock just struck midnight on Sunday night.

Not much has changed here. On Saturday night, Jonathan started getting a new barrage of drugs to treat what doctors think may be some type of infection in his brain and optic nerve (they're not sure at all that that is what they're dealing actually with, they're just guessing, and, quite frankly, hoping). He had a pretty heavy duty seizure-like episode last night and was totally unresponsive afterward for about ten minutes. Then, he was blind in both eyes for about a half hour. The past few days have been unreal and nightmarish. There's no other way to describe it.

Luckily, after these episodes his vision returns to normal fairly quickly, so they don't seem to be having a cumulative effect. It will be good to have the full medical staff back tomorrow so that we can hopefully get some sort of answers on what the heck is happening, and put a stop to it.

Jonathan is very sedated and on a LOT of drugs right now. Since I got back to the hospital this evening at 6 (after going home at 9 this morning), he has been awake and clear-headed for about 15 minutes. He is so drugged that he is having difficulty keeping straight what day it is, what time it is, etc. So far tonight, however, he is sleeping very soundly and appears comfortable.

Keep your prayers and good thoughts coming his way. And go out and eat a pound of "fun-size" Snickers bars and Mellowcreme pumpkins since we can't do that this year.

October 29, 2005
(Written by Chris at 8:30 pm EST)
The phrase of the day is "we don't know." Over the course of the day, Jonathan's seizures have been fairly regular, and the vision loss happens just about once an hour. Twice today, he lost vision in both eyes, and not just the left. He has been seen by oncologists, hematologists, neurologists, opthamalogists, radiologists, and the answer is pretty much the same: "we don't know." The three and a half hours of MRIs yesterday revealed nothing abnormal. Nor did the EEG. Nor did the carotid Doppler. So now, the prevailing theories are that he has some sort of infection in his brain and/or optic nerve, that his brain and/or optic nerve were damaged by the cranial chemotherapy or radiation, or that he has some sort of blood buildup in his head somewhere where it shouldn't be. Basically, we don't know. He is on a new regimen of antibiotics, antifungals, antivirals, steroids, etc. in hopes that it is an infection that can be cleared up. The doctors clearly aren't sure what's causing this, aren't sure how to deal with it, aren't sure if it could lead to permanent partial or total vision loss, etc. Hopefully we will get some better news tomorrow.

October 28, 2005
(Written by Chris at 9:30 pm EST)
Unfortunately, not much change to report today. Jonathan had three seizures this morning and his vision in his left eye continued to fade in and out all day. He is heartsick and so tired of all of this. Today he went for a "carotid Doppler" test to see if there were any issues in the blood flow to his brain. Then, he spent three and a half HOURS inside a MRI getting a battery of new tests. For someone who is supposed to be in protective isolation, he sure as hell spends a lot of time gallivanting all over this hospital. Call me crazy, but why weren't these tests done three days ago when all of this horseshit started? He is feeling very rundown, in addition to being totally exhausted by the seizures. His dad went home to Louisiana today, leaving Gail and I on skeleton crew. I will be spending nights at the hospital this weekend so he isn't alone.

Speaking of skeleton crews, since it's the weekend now, God knows when we will get the results of any of today's tests or, dare I say, any sort of treatment outlined to us. We will keep you posted as things happen. As Lucy Van Pelt says in The Great Pumpkin, "What a way to spend Halloween!"

October 27, 2005--LATE-BREAKING EVENING UPDATE
(Written by Chris at 8 pm EST)
Hi all. Dr. Isola (aka The Phantom of the Opera. . .he's here one minute and disappears the next), stopped by and gave us an update. He's received the results of the MRI, the CAT scan, the EEG, the brain fluid draw. The good news (and this is very good news) is that 1) Jonathan's brain fluid shows absolutely no trace of leukemia (it was so clear they didn't even send it for further testing), 2) the CAT scan and MRI reveal absolutely nothing wrong with his brain. . .no bleeds, no tumors, no nothing, and 3) Dr. Isola says the transplant is going beautifully, and that he considers it a success and a good match. That being said, Jonathan is laying in bed covered with red splotches and having occasional seizures and temporary blindness. Plainly and simply, they are stumped. They are thinking that the seizures and eye problems could be the residual results of the leukemia that used to be there, a reaction to the chemo therapy and/or radiation, inflammation of blood vessels in his brain, or "something we haven't thought of yet." So the approach will be to methodically and systematically change his medicines and see what effect it has. Clearly, it's great that we are not dealing with relapsed leukemia or a failed transplant, but this complication is frustrating and scary. We'll see what happens.

October 27, 2005
(Written by Chris at 4:30 pm EST)
Sorry to have been silent for two days. We've been in the midst of bad stuff. Jonathan's seizures have returned, but they now have a new feature: each time he has one (and sometimes even when he doesn't), he loses his vision in his left eye for anywhere from 10 to 30 minutes. The doctors are trying to figure out what is going on. A CAT scan and EEG revealed nothing. We are awaiting the results of a MRI from last night. It could be the leukemia (again, still, and yet). It could be some sort of cumulative reaction to medicine. It could be a reaction to the transplant. We're very interested in getting some answers soon and fast--two words that mean absolutely nothing at this hospital. This is heartbreaking and frustrating and scary and unfair and it stinks. Jonathan has barred me from putting expletives on the Web site, but if he hadn't, I'd put a string of them up now. His spirits and energy are in the toilet. His mother's and mine are in the sewer. We just have to move forward and see what happens. We will keep you posted as things develop.

October 25, 2005
(Written by Chris at 7:30 pm EST)
Greetings from a very wet and windy New York City. Jonathan had an ok day, and his white blood count is skyrocketing. . .he's up to 2,300 today! Not bad considering a week and a half ago there were none. He is still feeling pretty crappy, but again today, we heard talk about him going home in a week or two, which will be astonishing if it happens. But the head nurse said today, "every time your white count goes up, you get one step closer to the front door." It would be my preference never to come back in that door again.

The doctors have discovered that his unpleasant digestive issues are being caused by a bacterial infection, which is actually good news. There was some fear that it could be the result of the GVHD, which would not have been good, because that would mean his new bone marrow was attacking his digestive tract. The stomach issues should be cleared up with yet another pill.

That's all for now.



October 24, 2005
(Written by Chris at 8 pm EST)
Hi all. Hope you all had a good Monday. I actually made it in to work today, which was an odd feeling. . it's like leaving a disaster movie and finding yourself in a sitcom.

Jonathan continues to improve tiny bit by tiny bit by tiny bit. Best of all--and this is pretty earthshatteringly good news--his body is now producing its own HEALTHY white blood cells. . .or rather, his body is now producing someone else's healthy white blood cells. Pretty freaky, eh? This is a big milestone, because it means 1) the transplant "took," and 2) the chemo they gave him into his brain post-transplant didn't "leak out" and kill the new bone marrow. Quite a relief.

Again, it's very strange to get such good news when he looks and feels so bad. He says he feels like his body is completely betraying him, and he's been dealing with alternating rounds of mild headaches, extreme fatigue, nausea, and some pretty explosive and uncontrollable digestive issues (it ain't pretty folks. That is your official dose of "too much information" for the day). The doctors and nurses have assured us numerous times that this is all side effects of the transplant and the heavy duty drugs they're using for the GVHD. Those drugs--high-dose steroids--also tend to make people aggressive, angry, and even psychotic. God help us.

Today he looks like he escaped from a two-alarm fire rather than a three-alarm fire. His skin is still quite simply beyond belief, but the swelling in his face is almost gone and if he were wearing a sombrero, with long sleeves and long pants, he'd almost look normal. . .except for the sombrero.

There's even been some talk of him getting out of here in a few weeks, which is mind-boggling. Keep in mind that once he gets out, he will have several months of home recovery. We will have to be on the lookout for infections, recurrences of GVHD, and all sorts of other nice things. And it will be Halloween everyday.. . .because everyone who comes into the apartment will have to wear a mask!

October 23, 2005
(Written by Chris at 8 pm EST)
Good Sunday evening everyone. At long last, the frost is on the pumpkin here in the Big Apple, and it looks, feels, and smells like fall. We will be very happy to see the end of 2005.

Jonathan continued to improve today. His fever has finally vanished, the swelling in his face is going down, and the rash seems to be improving. "Rash" doesn't really do justice to his current dermatological state. His entire body--especially his head--look as though he barely escaped from a three-alarm fire. But it's nice to be in a place where we can see tangible signs of progress.

Best of all, his body is producing white blood cells. While the trend will have to continue for a few days before it's official, this could be a precursor to the engraftment of the new bone marrow. If he can get to that point with no infections, he will, for once, be extremely lucky.

He is feeling ok despite the fact that he looks so horrible. He read The New York Times today and we are now planning to watch Desperate Housewives. We really have to take each day (and even each hour) as it comes.

In other news, our friend Tracy ran a marathon today for the Leukemia and Lymphoma Society. . .26.2 miles! Coincidentally, the phone number of the bubble ends in 2602. Could it be a good sign? We hope so.

October 22, 2005
(Written by Chris at 7 pm EST)
Hi all. Things seem to be improving a little. Jonathan's fever has gone down a bit (it isn't totally gone), and he doesn't feel nearly as awful. He is still covered with a terrible rash. . .he looks like he had the measles and then laid on the beach with no sunscreen for two days straight. The steroids they are giving him for the GVHD have also made his face extremely puffy. He is not going to be participating in any beauty pageants soon.

In other news, the steroids and the lingering effects of the cranial radiation are making things. . .interesting. . .as far as his thought processes are concerned. He is sometimes having very vivid dreams that he thinks spill over to reality, and he is having some very definite short-term memory issues (semi- Alzheimer's-like), which we were warned about prior to the radiation treatments. These side effects SHOULD be temporary. However, he is in pretty good spirits and he is definitely better than he's been the past few days. And the good news is that he still has no infections, which are the doctors' biggest fear and would be the most problematic. The thing to keep in mind is that this is a process which will take a LONG time to resolve itself.

October 20, 2005
(Written by Chris at 8:30 pm EST)
Hi everybody. Just a quick update to let you know what's happening. Jonathan still has a high fever and now a lovely rash all over his body. The doctors think that he is having "hyper acute" Graft vs. Host Disease (GVHD). GVHD is very common with transplant patients and can range from mild (like fever and rashes) to extremely serious. He feels horrendous and has been alternating between sleeping, shivering, and being sick.

Two good pieces of news with this development. First, people who develop GVHD this early after the transplant tend to NOT relapse into leukemia. So that is great. The other good piece of news is that the doctors think they can clear this present problem up with steroids and other drugs. However, you can also develop more serious and dramatic GVHD later. So we shall see.

The doctors still think he is infection-free, which is good news, since an infection at this point would be bad news, Also, his most recent brain fluid test also came back negative for leukemia. It's very weird to be getting several pieces of encouraging news when he looks and feels so bad.

That's all for now. Keep calling the answering machine. . .(212) 241-2602. . .even in his crappy state, he still listens to the messages and laughs.

October 18, 2005
(Written by Chris 8 pm EST)
Hello all. A busy day at Mt. Sinai. Last night, Jonathan began developing a fever and chills. . .an expected consequence of the transplant. By this morning, his fever was quite high (104), and they decided to remove his Hickman catheter from his chest, since it has been getting clogged lately and it was the site of an infection a few months ago. So he left the bubble and went in for a quick surgery to remove the port and reinstall a new, simpler port in his neck. He is back in the bubble now and feeling ok, despite the fact that he still has a pretty high fever. Again, the infection is an expected consequence of the transplant. We just want it to go away soon with the antibiotics he is currently receiving.

In other news, Jonathan's white cell count is officially zero. Zilch. He will be getting an IV of our good old friend Neupogen to stimulate the growth of white blood cells. .. but now, the white blood cells it will be stimulating aren't his old, shoddy, leukemia-prone cells, but rather, the new and improved bone marrow that he received from the donor last week. Like an invading army, it's going into his system and hopefully cleaning house. We all hope it is from a Sumo wrestler.

October 17, 2005
(Written by Chris 9 pm EST)
Hi all. We've made it through another day, and for a nice change of pace, today we got some GOOD news. The most recent in-depth test of Jonathan's brain fluid revealed no trace of leukemia. . .which, obviously, is fantastic news. They are going to give him one more blast of brain chemo tomorrow, which will hopefully kill off anything else which may be lurking. There is no way to know if it is all totally gone, but we are hoping.

Even with this happy news, we are far from out of the woods. The next two weeks will be critical, as Jonathan will be extremely prone to infections until the new bone marrow takes over. And he is feeling pretty wretched. As one of the doctors described it to me, "imagine the worst flu you've ever had, and then multiply how bad you felt a hundred times." So we are doing everything we can to keep him as comfortable as possible, including one of us here at his bedside 24 hours a day. Finally, I have an excuse to indulge my vampire ways.

Many thanks to all of you who are calling the hotline. Jonathan (and the rest of us) get a big kick out of the messages you are all leaving. He's been serenaded by three-year-olds, we've gotten plot summaries of Desperate Housewives from Mary Alice herself, and George W. Bush calls everyday and reminds him to "stay the course." So please keep calling, and keep your prayers and good thoughts coming. More later!

October 15, 2005
We lied. The hotline is set up, but you cannot actually call at anytime day or night. Although Mount Sinai has no problems waking up patients during the night to check vital signs or even just to ask how we're sleeping, the last incoming calls come in at 9PM eastern time. After that, they turn off the phones for the night. So if you'd like to call, do so before that time, or during the day when presumably the phones work.

Otherwise, not much is going on around here. I'm receiving two blood transfusions today, but this was expected due to my lack of marrow.

More later!

October 14, 2005
Howdy! Me again! Another eventful day here at Mt. Sinai. Unfortunately, this morning I had yet another "mild, seizure-like episode." This is getting to be a real drag.

At this point, the doctors really aren't sure WHAT is causing the seizures. Their primary suspicion is that it may be residual leukemia, but it also could be my body reacting to all of the drugs I've had pumped into my system, or just a weird metabolic fluke. Thankfully, these episodes are very short and mostly I don't remember a thing about them when they're over.

Today, the doctors drew more brain fluid to see if there is leukemia still hanging around in there. They also made the difficult decision to give me another round of cranial chemotherapy. . .which is tricky, because there is a chance it could go in and kill off my brand-new bone marrow. Clearly, we don't want that to happen. . .but if the leukemia stays in my head, then the transplant is probably doomed anyway. So we are in the midst of a major "wait and see" period. On Monday, if they discover the leukemia is still there, they will give me a dose of another type of chemo into my head.

This is really not a good situation, any way you slice it. The transplant is enough of a nightmare on its own, and this stubborn leukemia in my head is just another layer of problems. The good news is that there are people who have been in my similar situation who have gotten through this and emerged disease-free. So we really just need to wait and hope. In the meantime, I'm trying to keep positive thoughts. That's about all I can do - I rarely watch TV, watch DVDs, read, or other stuff like that. It has just become too difficult to concentrate.

I'm also developing mucusitis, sores in my mouth and throat that will make it extremely difficult for me to eat or even speak for several weeks. I can still hear, however, so we've bought an answering machine into my room. It's lonesome in my little bubble, so please feel free to give me a call-anytime, day or night, and leave a message. Tell me a joke. Read me a recipe. Give me advice on what to do next. During my brief bleary hours of consciousness, I will listen to all of the messages people have left me. You don't have to worry about waking me up - we've turned the ringer down. If you'd like to call the Boy in the Bubble Hotline, it's 212-241-2602. No pressure or anything. It's just that for the near future I don't think I'll be able to actually talk on the phone because of mucusitis and headaches.

October 13, 2005
Hello, all! I had two more seizure-like episodes last night and today, so my doctors have come up with a new course of action. There is a very thick form of brain chemo that can be used without interfering with my transplant. My meds will also be adjusted slightly.

On a rather annoying note (not that still having brain leukemia isn't annoying), I've had hiccups for the past 24 hours. Not regular hiccups, mind you, but turbo, presumably leukemia-based super hiccups. I'll have 10 or 15 in one breath. Fun!

It dawns on me that I didn't even discuss the transplant portion of the BMT. It was remarkably low-key. I've had stronger reactions to red blood cell transfusions. Kerri and Sam should be happy to know that the blue monster was with me the entire time, sleeping above the delivery line.

Apparently, the really bad stuff starts this weekend. From what I understand, it's a 3 week rollercoaster ride of exhaustion and illness. As such, this may be my last personal update in quite some time. Don't worry, though. Chris will be here to keep you informed with new updates, albeit much more drama-filled ones.

By the way, my father has extended his visit indefinitely, and my sister Jenise is on her way tonight for a visit of her own!

October 12, 2005
Hello, lads and lassies! Today around noon I received my transplant. This is the time I'm supposed to talk about what the bone marrow transplant organization rather goofily refers to as my "rebirth." Unfortunately, I've received a bummer of a rebirthday present.

Although the initial look at my brain fluid indicated that it was free of leukemia, the cytology report just came back and indicates that I still have leukemia in my brain and spinal cord. As you may remember, traditional chemo and transplants are not as effective with those areas. This means that there is a possibility that I may come through this with no leukemia in my marrow, but with leukemia cells still in my brain and spine - along with those wonderful headaches and bouts of nausea.

Discouraging? Yes - but by no means devastating news. The plan will now be to recheck my brain fluid after my transplant has taken hold and then (if necessary) give me more brain chemo. So it seems as if the process will be a bit longer than we originally thought.

I want to scream, I want to throw the computer, I want to bang my head against the wall. Of course, all of those things would simply make the headache worse and leave me with a broken computer. Instead, I guess I'll just put my faith in my doctors that this will get taken care of as quickly and efficiently as possible.

Thank you for all the kind thoughts, cards, and emails. I was trying to answer emails for a time there, but I'll have to stop again. Sometimes it takes me two or three times to get the right words typed. I don't think this is the leukemia or brain damage or anything like that - just simple stress and an inability to concentrate. I look forward to being able to see and talk to you all again ASAP.

October 11, 2005
Today's day -1: all the fun happens tomorrow! My donor did his good deed yesterday and his marrow is working its way toward us even as I type this. Still no word on exactly when the transplant will take place on Wednesday.

In other news, my headaches continue. No seizures, though, so that's good. Yesterday's MRI proved somewhat inconclusive, mostly showing a bit of unexplained inflammation. My fluid is clear, so this may simply be a reaction to the radiation and chemo. I received another shot of brain chemo today just to be safe. And no matter what, I still get the transplant tomorrow.

Well, the next time you hear from me, I'll have someone else's marrow in me. Won't that be fun?

October 10, 2005
I'm baaack! Today - my first day without chemo - was another funky day. The medicine they give me to prevent my headaches has a tendency to knock me out, so I slept for a large chunk of the day. Except for the 3 hours I spent downstairs waiting to get yet another MRI. I was assured that it would take only a few minutes, but I guess hospital time works a bit differently.

Because of my seizures, I'm now sleeping in Linda Blair's bed from The Exorcist - basically a regular bed with padded restraints taped to the sides.

My real dad arrived in town last night for a week's visit. I say "real dad" because Chris apparently looks so elderly that everyone at the hospital thinks HE'S my dad. To say "everyone" is not an exaggeration. Two nights ago, the housekeeper told my mom that I look more like her than my father.i.e. Chris.

Thanks to the generosity of our many friends, my parents (and later Chris) will be staying in Mount Sinai's TLC unit for the duration of my hospital stay. What is the TLC, you may ask? It is a nearby complex especially for family members of patients who are undergoing various types of transplants. This will make like extremely convenient all around, and we appreciate this extraordinary act of kindness.

Speaking of acts of kindness, Jeremy Johnson's triathlon was yesterday. Here are his thoughts on the event, as well as a pic:

On Sunday, October 9 I had the joy and challenge of racing in the Hermosa Beach Triathlon.

THE TRIATHLON IS OVER, BUT IF YOU HAVEN'T DONATED, YOU CAN STILL DO SO UNTIL NOVEMBER. GO TO MY WEBSITE LISTED AT THE END OF THIS EMAIL.)

It was joyful day all around. Team in Training athletes in the Greater Los Angeles Chapter raised over $100,000 for the cause - an END TO BLOOD CANCERS. That's just one race in one part of the country. When you consider all the races across the U.S., it really adds up and you see that you are making a difference. I'm extremely thankful to everyone who's contributed. I have very generous friends and family members who helped me beat my fundraising goal, for a total of $3000 so far. Thank you all. I'm thankful as well to all my teammates, the coaches, the mentors, the captains and other TNT people who made this season so great. Go team!

Now Jonathan, let's beat this thing!!! www.active.com/donate/tntgla/JeremyJ

October 9, 2005
(Written by Chris at 4pm EST)
Every time we move one inch forward, it seems like we immediately move ten inches backwards. Yesterday, Jonathan had two more of the "mild, seizure-like episodes" that he had a few weeks ago. Folks, I am not going to sugarcoat this or try to be funny. . .for his mother and I it is truly terrifying and scary to watch. Yesterday, he keeled over while working on the computer and was out for about 10 seconds. And then, both yesterday and today, he had episodes where he kind of glazed over, and is very definitely "in another place." He remains conscious and can communicate with us, but it's like speaking to someone who is hypnotized. He feels okay but headachey after they happen, and doesn't remember a thing.

This is all very interesting since we were told earlier that the episodes were caused by the leukemia in his brain and spinal fluid. Now, allegedly, the leukemia has been killed off with chemo. . .so it's anyone's guess as to what is happening. My personal opinion is that the doctors have absolutely no clue. So he is scheduled to get another CAT scan this afternoon, which, I predict, will show nothing abnormal. The leukemia may not have been killed off, this could be a side effect, we have no idea. But hopefully someone will be able to give us an answer soon. The transplant is still scheduled for Wednesday, and apparently nothing will stop it, so we will have to wait and see what develops. The BMT alone would be enough of a challenge. This seizure thing is frustrating and defeating and plainly and simply crummy.

October 7, 2005
Afternoon Update
Remember I told you quite some time ago that my friend Jeremy Johnson is participating in a Triathlon to benefit the Leukemia and Lymphoma Society? The Triathlon is actually this weekend. Send him your positive thoughts.and your positive money - it isn't too late to contribute. Every little bit counts. Just go to this site and contribute away!

October 7, 2005
Seven full body radiation treatments down, one more to go! After this afternoon's treatment, I'll be finished. Then tomorrow we start with two days of high dose chemo. It's hard to believe that the transplant takes place a week from yesterday.

My frequent headaches may have been caused by the radiation killing off brain cells. This isn't a surprise. I just hope it's killing off the millions of cells I never use rather than the ones that, say, control my ability to drive and drink without dribbling on myself. They are now thinking of combating the effects by shooting up my brain with steroids. Now I'll never be able to fulfill my goal of playing major league baseball.

October 6, 2005
One of the possible side effects of radiation is short term memory loss. Yesterday I turned on the computer, got ready to write an update, and then.who knows? Later, I went to show my mom and Chris what I had typed, and we discovered that I hadn't actually typed anything. Either way, it was a slow day.

I am now over halfway through my total body irradiation. The biggest side effect is nausea and vomiting, usually accompanied by a headache. The anti-nausea medication also leaves me feeling really tired. I have another treatment to my back this afternoon, followed by final treatments to my front and back tomorrow. Each treatment is 20 minutes, but it honestly doesn't feel that long.

The gauze has finally been taken off of the port in my head. I now look like something out of a low-budget Frankenstein movie. It is a golf ball sized knot surrounded by something that my mother describes as a "nasty looking drainage ditch." Beautiful!

Well, let me run. I'm waiting to eat.and, most likely, throw up.my lunch. More later! (If I remember.)

October 4, 2005
Greetings from beautiful Mount Sinai hospital! I'm writing this in room 208C of the bone marrow transplant unit. Room 208C has just enough room for a bed, a thirteen inch TV, a portable commode, a chair, and a nightstand. Giant filters cover two walls, a window offering a view of a building next door is on the exterior wall, and the fourth wall consists of a metal frame with what looks like a clear plastic shower curtain hanging from it.

I can only have two visitors at a time, and they mostly have to stay on the outside of the shower curtain. One person can venture in, but only briefly. Otherwise, they have to view me as if I'm in a fish aquarium.

The filters - which help to purify the air - are quite noisy. It isn't too bothersome, though, because it helps to serve as white noise.

A panel next to my bed allows me to control each of the room's overhead lights, the temperature in the room, and both the privacy curtain and the window shades.

I have a regimen I have to closely follow each day. Every four hours, I have to rinse with these gross mouth washes. (One of them contains both wild cherry and banana flavoring, which is never a good sign.) I have a slew of ointment and powders I have to apply to places I'd rather not talk about. Plus I get to bathe out of a bucket using this stick red liquid soap stuff. Things I won't have to do: brush my teeth, wear deodorant, wash my hands (since there is no sink in the room). Yes, I'm in hell.

I had my first round of total body irradiation this morning, with a second round this afternoon. TBI isn't as torturous as cranial, but it comes with a price.nausea. Yes, I had a repeat visit from lunch this afternoon.

No matter - I am 100% ready for this. The process has begun!

October 3, 2005
Hello all! Right now, we’re playing the waiting game. At some point today, Mount Sinai will call to say that a room is ready for me, and then my freedom will be over. Now I know what Martha Stewart felt like while waiting to go to Camp Cupcake, only I won’t be able to wander the grounds gathering weeds for wild greens salads.

I’m not really looking forward to spending several months in the hospital, but I’m ready to get it over with. The sooner I get in there, the sooner it will all be over. Some hard days are ahead, but hopefully this will also mean the end of my headaches (which have gotten more frequent over the past few days) and an eventual return to normal eating (since radiation, my body has a tough time telling the difference between hunger and nausea).

Anyway, it all starts today. Chris or I will continue to post updates here as things happen. See you when I get out!

October 1, 2005
Who is having trouble believing that it's already October? I know I am. I guess time really does fly when you're having fun!

Speaking of, yesterday I had my final round of cranial radiology. They also continued the process of prepping me for next week's full body radiation by strapping me into the torture device that keeps you in one position of the entire 20 course. It turns out, though, that they have to recut my lung block, so the rest of the prep work has been postponed until Monday after I'm admitted.

I'm trying to enjoy my last days of freedom. I took my mom into the city this morning and we visited my favorite bookstore and my favorite music store so that I could bid them a temporary adieu. I bought too many books and a CD to add to my already bursting iPod. Then we had lunch with my friend Kerri at this great place called Chat 'n Chew. I tell you, it's nice to see friends when I'm wearing something other than a hospital gown. Now I'm back at home resting.and trying not to count down the minutes until Monday.

September 29, 2005
Yesterday I had my first round of cranial radiology. If you ever need to come up with an effective form of psychological torture, might I suggest cranial radiology? It is truly terrible. First, they strapped me down using the mask. I guess my head grew over the last week, because it is incredibly tight. Imagine someone trying to strangle you with a hard version of those net bags that onions come in at the supermarket and you'll begin to have the idea. It was so tight that the pattern stayed on my face for 40 minutes afterwards.so tight that the vision in my left eye was blurred for about an hour afterwards. The sounds, smells, and lights were even more disturbing.

The good news is that what took 30 minutes yesterday took only 3 minutes today since all of the measurements had already been done. And tomorrow's treatment should be my last.

For those of you who are wondering how I'm looking these days, it's official - I look like a cancer-ridden sickie. On the subway home last night, a woman asked me if I wanted her seat. A New Yorker giving up a subway seat is an occurrence as rare as appearances by Haley's Comet. I've seen 300 year old blind women with canes forced to stand up, so I must really look near death. Maybe it was just the onion net pattern on my face.

September 28, 2005
If you have any questions about the BMT process, Chris has found a great resource that provides a step-by-step guide to what will be happening. Click here for more information. For an idea of what the timeline is like, note that up to day 100 after the BMT is still considered "early recovery."

September 27, 2005
My schedule for the next month is slowly starting to come into focus. Here's what we know so far:
Wednesday, September 28: Cranial radiotherapy #1 at 5:15PM
Thursday, September 29: Cranial radiotherapy #2
Friday, September 30: Cranial radiotherapy #3
Saturday, October 1: a day off
Sunday, October 2: my final hours of freedom
Monday, October 3: admit into Mount Sinai
Tuesday, October 4-Friday, October 7: four days of todal body radiation
Saturday, October 8 & Sunday, October 9: chemo
Monday, October 10 & Tuesday, October 11: days of rest
Wednesday, October 12: infusion of new bone marrow cells

I know you all must be jealous - it sounds so fun! Monday seems awfully close, but the sooner we get started, the sooner it will be over with. Here we go.

September 26, 2005
This weekend was completely uneventful - just the way we like 'em! We went to the movies to see Flight Plan and even had dinner at an actual restaurant. Plus my mom ventured out to Queens Center Mall on her own. We're living wild!

Still no word on when radiation will start, although I still assume it will be at some point this week.

In weird news, ever since my brain chemo on Friday, my taste buds are registering everything as being extremely salty. Even extremely non-salty things, like sugary cereals and toothpaste. Needless to say, this isn't very pleasant, but things could be far worse, so I won't complain too much.

September 23, 2005
I've just gotten home from a long day of doctorin'. This morning I got another dose of brain chemo. This will probably be my last dose for a while since that kind of chemo can't be administered at the same time as radiation.

Speaking of radiation, I spent the afternoon at the radiologist doing prep work. This was a bit disturbing, I'll admit. In order to make sure that the same dosage hits the same exact place every time, I'll have to wear a mask that holds my face into place. I was fitted for that mask today. I can't even describe how freaky it was. Imagine one of those Vincent Price movies where he turns humans into wax figures and you'll get the basic idea. This warm, wet, plastic mesh was squished onto my face, completely immobilizing me. Claustrophobic and uncomfortable barely begin to describe the sensation. This was merely the dry run. They'll contact me next week about actually getting a dose of radiation along with wearing this torture device. Good times ahead!

September 22, 2005
Great news! I am typing this from home. I arrived yesterday afternoon around 5PM. I have about a million pills to take each day, and tomorrow I have not one but two out patient appointments (one to get brain chemo and the other to begin the process of radiation). It's terrific to be home, and today is the first time in over a week that I've awakened with no nausea and headache. There's something to be said for sleeping in my own uncomfortable bed!

Speaking of uncomfortable beds, before we left the hospital, we took a tour of the BMT unit. It looks pretty horrifying. There is absolutely no privacy. There isn't even a bathroom - patients have to use portable commodes so that everything can be measured. Can't wait!

My dad is headed to the airport this morning to return to LA. He'll be coming back to NYC for another visit during the BMT phase.

Here's hoping that I'm home a little longer than I was last time!

September 21, 2005
Hello! Sorry for the lack of an update yesterday. Time just got away from me. Yesterday I received another dose of chemo through the port in my head. I know it sounds gross, but it isn't painful at all. Sort of like a bug bite. Hopefully it will help to alleviate the headaches. I'm not having as many, but I do have headaches and nausea each morning when I wake up.

There is talk of my going home by the end of the week or early next week. I'll still have to come into the hospital as an outpatient on an almost daily basis since radiation starts next week. One of the holdups with my going home is that apparently one of the doctors thinks I won't be comfortable with going home. Obviously there is some sort of major disconnect in the communication process with my doctors that we will hopefully be able to overcome before the BMT begins in earnest.

Finally, last night we here in room 214 caught a new NBC sitcom that we thoroughly enjoyed -- My Name is Earl. I recommend that you check it out when it plays again next week. It has more laughs per minute than almost any other show I've seen.

September 19, 2005
(Dictated by J to C at 8 pm EST)
Hello all. Today was a pretty uneventful day (which frankly, we could use more of). I took a nap, battled off a few mild headaches, and again washed up by myself. Clearly, it doesn't get much more exciting than that. The doctors hope to send me hope for a couple of days before we start gearing up for the BMT, but I am not getting my hopes up. If it happens, it will be a pleasant surprise. I'm also back on a diet of solid food after my fast of last week. Tomorrow, I will get another shot of chemo in my head. . .which will almost be like my first, since I don't remember Friday at all. That's it for tonight. We'll keep you informed of all of tomorrow's exciting developments.

September 18, 2005
(Dictated by J to C at 4:30 pm EST)
If the air in your neck of the woods smells a little sweeter, it's because I was able to wash up on my own today for the first time in several days. It was tiring but worth it. I've spent much of the day sleeping, and had a slight headache and sore throat, but otrherwise there's not much to report. My regular doctors are back tomorrow, so hopefully we'll find out the plan for the rest of the week.

September 17, 2005
(Dictated by J to C at 9 pm EST)
Hello, I'm back. I remember ABSOLUTELY NOTHING about yesterday. Frankly, hospitals should look into this. . .having patients not remember their visits at all. Unfortunately, the amnesia does not spread as far back as Thursday, when I received the bad news and waited hungrily all day to have the port removed from my brain. I didn't feel as dizzy today as I did on Thursday, so hopefully that problem is taking care of itself. I even managed to get out of bed for a few minutes today and sit in a chair. I needed a lot of help, but I did it.

I have to admit that Thursday was extremely discouraging, but it has helped to reaffirm that I am ready to take on this challenge. Plus, I now have little slice of home since my father is here, and he and my mother can now argue in New York rather than in Thibodaux.



September 16, 2005
Hi all. It's Chris writing. I know many of you are concerned about what's up here so I am putting up this brief update. Most importantly, Jonathan is back in his room and has been resting fairly comfortably for most of the day. Last night, he did, in fact go into surgery and have his cranial port realigned. It is now in its correct position and he received his first dose of chemotherapy through it this afternoon. This chemo is very short. . .it only takes about ten minutes for it to go in. But he is pretty tired and drugged right now.

When this is over, Mt. Sinai Hospital is going to be receiving quite a strongly worded letter about our experiences this week.. As Jonathan says, for the last two days they have been treating a disease, not a patient. Not only did they botch the placement of his port on Wednesday--which would have been bad enough--but they then kept him waiting for the realignment opertion until 10:45 last night. Keep in mind that he has not been allowed any food or liquids since TUESDAY NIGHT. Needless to say, the mood in his room last night was not the greatest. Alternating between feeling ravenously hungry, headachey, dehydrated, and dizzy is not a fun way to spend two full days. I was on my full-on broomstick with the staff and Gail turned into a bona-fide Ragin' Cajun. He returned to his room at about 5 am (!).

Now, however, things seem to be under control. The port is correct, the chemo is going in, and Jonathan feels much better than he has for a few days. He is even midly harrassing me as I write this.

On a lighter note, the hospital has been the scene of much distracting drama. Yesterday we had a big rainstorm and water came pouring into the hall outside Jonathan's room. The nurses--who obviously have to deal with life and death trauma on a daily basis--were absolutely UNDONE by this development. The panic continued about the rusty water spreading across the floor until I quite calmly threw a few blankets down on it . And that was that. The nurses were very impressed. That's right folks, I saved Mt. Sinai. In other news, my cousin Kerri came to visit today and her beau Sam fainted right in the hallway. Oh, and everyone at the hospital thinks I am Jonathan's father. They also think Mickey (his boss) is his brother and that Nicole Roberts is his sister. They will be very surprised when his REAL father shows up here tomorrow for a visit that will last until Thursday.

September 15, 2005

This was supposed to be the part where I tell you that the operation was a smashing success, that I've had little pain, and that other than profound dizziness, all is well. That changed a few minutes ago when the surgeon came in to tell me that a CAT scan this morning showed that the port was installed incorrectly. The tip of the port is touching my brain, so they have to go in again today and fix the problem..

Needless to say, this is incredibly disappointing. No one wants to have the same procedure done twice in two days, and no one wants to go three or four days without eating. But I get to!

I've just ripped up a magazine and flung in across the room in frustration. That was helpful, even if it made me slightly dizzier. And it's no consolation when the doctors assistant comes in to re-tape my head and says "In all the time I've worked here, this is the first time this has happened." Thanks. I feel privileged. Another assistant said that it will be easier this time since there will be no drilling involved. He conveniently left out who it would be easier on.

Oh well! Keep up the positive thoughts! My luck has to change at some point.

September 14, 2005 9 pm EST update
(As dictated by J to C)
I'M ALIVE!! More later. . .

September 14, 2005
Howdy! Just a quick note before I go under the knife to have a lovely geyser installed atop my head. The information that we received yesterday morning is a lot less scary as various doctors have come by to talk to us. It's as if various pieces of the puzzle are coming together to make the picture much clearer. One good thing is that I actually had symptoms and the problem was diagnosed. Otherwise, the likelihood of relapse even after the BMT would have been much greater.

I had my first round of chemo injected directly into my spine yesterday afternoon. It was surprisingly easy and painless. From now on, it will be directed into my brain port. Sounds weird, but it will be better.

I'm sure I have more to say, but they are supposedly going to take me to the operating room soon. I'll be back with another update tomorrow at the earliest or will have Chris update you on my behalf.

September 13, 2005
Howdy all! There comes a time when you just have to pull the band-aid off really quickly and get it over with, no matter how painful. This is one of those times. The doctors have discovered the cause of my headaches - the leukemia cells have invaded my spinal cord and brain. This is what Dr. Levine meant way back in March when she discussed the possibility of leukemia "hiding out" in my system. It may also help to explain my quick relapse.

This makes the process of the BMT a little more complicated, but it is by no means dire. Nor is it totally unheard of. The biggest change (thus far) is the method of the BMT. The original plan (we discovered today) was for the doctors to harvest the new bone marrow from my donor (who, by the way, is a perfect match) on October 3 and to give me chemo and full body radiation leading up to that milestone. Now, however, a port will be installed in my head sometime tomorrow afternoon. In addition to what was originally planned, I will also be receiving chemo and radiation directly into my head. Why? Because regular chemo does not effectively penetrate into the brain or spinal cord. This provides an explanation as to why the leukemia cells are still showing up there.

This is disappointing news, but as we learn more about it, the entire process is becoming less and less scary. The side effects should be minimal. As the radiation oncologist just told us, they have treated far older and less healthy patients than me with good results. There are no guarantees, of course, but again, this is by no means a death sentence.

In short term health news, I've been a little dizzy since last night, but nothing terrible. I had an MRI last night when they were trying to find the source of my headaches and I'm getting another one today in preparation for the fitting of my port. I haven't really had a headache since early yesterday afternoon. And, as Martha Stewart would say, that's a good thing. Let's focus on the little positive things that happen every day as we march toward the big, slightly scary stuff.

September 12, 2005
(Dictated by J at 6:30 pm Monday, posted by C at 11:30 pm Monday)
Hello everyone. Exciting news. I missed the food at Mt. Sinai so much that I decided to check myself back in on Sunday afternoon. That's right. . .I've returned to my home away from home (and this time I have a Central Park view).

All kidding aside, I am back at Mt. Sinai. Over the weekend, I had a series of bad headaches that got progressively worse (and I'm not referencing my mom or Chris). By Sunday, I was holed up on the sofa, so we decided to come in (I'm normally holed up on the sofa, but this time I wasn't even watching TV, so we knew something was wrong). A little ambulette came and picked me up from home and brought me to the hospital (unfortunately without the sirens blaring).

Since arriving at the ER, I have had several mild, seizure-like episodes*** (see below) on top of my headaches. It sounds worse than it is, and the doctors assure us that we will find an answer to what they are and where they're coming from soon. I've had a CAT scan and a spinal tap, and I'm scheduled to take an EEG and MRI. With a few more tests we will have alphabet soup.

The best bet on what's causing this so far is that it is some treatable form of meningitis. Again, the doctors are saying we are NOT in a crisis (except that I'll have to eat the food for a couple more days).

I feel much better now, and my headache is not as bad. It seems like having the spinal tap, oddly enough, was the miracle cure for the headaches (or at least that's what I'm hoping). We will let you know as soon as we have any test results.

***By "mild, seizure-like episodes," I mean that for 30 seconds or so at a time, my face goes slack, my pupils dilate, I become unresponsive, my right shoulder twitches, and I drool a little. . .basically indistinguishable from my normal self. (EDITOR'S NOTE: These "mild" episodes have shaved, cumulatively, about 37 years off of onlookers' lives in the past two days, but things are looking better.)

September 9, 2005
Yes, it's true - I'm home. We got home at 3PM yesterday after literally making a break from the hospital. They wanted us to wait until a wheelchair transport could be arranged, but we ran out of the hospital instead. The nurse asked if I would be okay with walking ("It's a long way."). Lady, have you ever met me?

The home health care people stopped by yesterday to bring me a little IV pump to administer my antibiotics (or should I say "antibiotic," since they reduced me to one after insisting I needed two). The pump is like one of those oversized pocket calculators from the 1970s. It's really easy to operate.except when it decides to let out a series of piercing beeps at 1AM because it thinks that there is some sort of stoppage. I have to carry it around with me for the next four days in an ugly little purse. Plus we tied it to me in the night so that I wouldn't forget it when I had to take bathroom breaks. Fun!

I have an appointment with Dr. Isola Monday morning. We will hopefully get more information about scheduling for the BMT. I've heard, though, that they like to send patients home for at least two weeks to build up their strength. Party!

September 8, 2005
Late Breaking Update: I am now happily lounging at home in my very own living room. I hereby take back all of the nasty thoughts I've had about the doctors at Mount Sinai. They're all perfectly lovely people. Especially since I'm now at home.

September 8, 2005
Sorry of the lack of an update yesterday. I spent the entire day waiting to take a test that involved shoving a camera down my throat to get a better picture of my heart. This was to make sure that the bug I had a few weeks ago hadn't invaded my heart. For those of you keeping track, the blood cultures came out negative, my fever and symptoms cleared up, the chest x-ray came out negative, the regular sonogram came out negative .yet someone still felt the need to have home videos from inside my throat. Shockingly enough, the tests came out negative. Next week they're going to rip out my heart and visually examine it JUST TO MAKE SURE. Yes, it'll kill me, but at least I'll die with them knowing that I do not have a bug.

On the going home front, the earliest I might get sprung from this prison would be tomorrow (Friday) morning. I still have IV antibiotics that need to be administered every four hours through Saturday night. They are in the process of setting up home health care to come out to Forest Hills to give me the antibiotics, and tomorrow is the earliest that can be in place. Frankly, though, I'm not getting my hopes up. They are just nutty enough here to decide that I should remain in the hospital for my entire course of antibiotics. At least my days here are numbered either way.

That's all for today. Maybe the next time you hear from me I'll be typing from the comfort of my own home.

September 6, 2005
Hello all! I hope that you had a happy Labor Day. Needless to say, I didn't get out much, but I slept with my head at the foot of the bed just for a change of pace.

As of now (Tuesday at noon) there is still no indication as to when I might be going home. Dr. Isola is out again (the man takes more vacation days than President Bush), so that doesn't necessarily help matters. Theoretically I will be taken off of another antibiotic today, but it's really hard to get a straight answer.

My spirits are still up, but I'm ready to go home. Ironically, if he hadn't mentioned that I would be going home this week, I'd be fine. Now that I know that it's a possibility, it's a little frustrating when the covering doctors don't take the necessary steps to get me out of here. Maybe tomorrow. Keep your fingers crossed!

September 3, 2005
Since I don't anticipate anything happening over the next few days, this is my last post for Labor Day weekend. Besides, I'm thinking of having a bedside barbeque using a garbage can and some hospital linens.

If my numbers continue to rise, I will be taken off of one of my antibiotics tomorrow. The doctors will monitor me to make sure I don't develop a fever or grow horns or something. Provided all is well, they will probably take me off of another antibiotic as early as Monday. Then I will hopefully be able to go home by mid-week.

If any of you are as horrified as I am by what has happened in New Orleans this past week, you can donate to the relief effort by visiting the Red Cross' Web site at this address: https://give.redcross.org/?hurricanemasthead. Be sure to indicate that your donation is for 2005 hurricane relief.

September 2, 2005
Here’s a quick update for today before everyone heads out for Labor Day fun. My white count is up to 1200 today, but we are waiting for one of my other counts to rise from 300 to 1000 before I can be weaned off of antibiotics and sent home. It seems like that will happen early next week.

The detailed results of my bone marrow biopsy are in, and it looks as if my chromosomal abnormalities are gone. (My mental abnormalities, however, remain intact.) This is good news, but remember that my body can’t seem to remain chromosomal abnormality free for very long.

Finally, at 4AM this morning, my IV began beeping because it was low on fluids. I rang for the nurse. When he arrived, he turned on the light in my room, replenished the fluids, and drew some blood to send to the lab. As he’s drawing my blood and I’m sitting there with the lights on and with my ears still ringing from the IV alarm, he turns to me and says “Do you sleep, Jonathan? Every time I come in here, you’re awake.” Everyone will be happy to know that I restrained myself from hitting him.

September 1, 2005
Not much to report today. My white blood count is up from 400 to 600. When I hit 1200, I'll be taken off of the IV antibiotics and sent home with an oral antibiotic. As far as when that might happen, you probably shouldn't expect to see me at your Labor Day barbeque.

August 31, 2005
Hello all! Here's a quick update for today. My white count is slowly going up - I'm at 400 today - and in a few days Dr. Isola will be able to readjust the ridiculous amount of antibiotics I'm receiving. My platelet count is down, though, so I'll be receiving a transfusion today. Just what I need - another Benadryl coma.

Finally, two bits of good news. First up, I apparently will be going home once my numbers rise to acceptable levels. I'll be able to sleep in my own bed, watch my own TV, and have my mom stare at me for hours on end in my own living room. Exciting stuff! Dr. Isola didn't give any indication of how long I might stay home (i.e. when the BMT will take place), but he did drop another piece of good news. The donor that he has been considering is in the process of getting a physical - it either happens today or happened yesterday. This is one of the last steps in the donor qualification process, so we should have definitive word on the donor's acceptability by early next week.

Remember, it isn't too late to donate to either of the leukemia fundraisers detailed below. Or, if you're feeling generous, to donate to the hurricane relief efforts in Louisiana and Mississippi.

August 30, 2005
Absolutely nothing exciting to report health-wise today. The doctors have decided that my blood infection has nothing to do with my Hickman catheter. They've also found yet another medication that will fight it better than the one they switched to yesterday. Soon I'll have every drug known to man coursing through my veins. Except for the fun ones.

We haven't been in contact with all of our friends and relatives in Louisiana - phone service is spotty - but Thibodaux seems to have fared well. My nephew is intrigued by the fact that a two story apartment building in our neighborhood lost its roof. And the family that rode out the storm on a shrimp boat claims that they slept through the entire thing. I guess a case of Pabst Blue Ribbon will do that to you.

August 29, 2005
Hello all! I'm checking in with an early update today because I'm scheduled to receive a blood transfusion later today, and the Benadryl makes me even loopier than usual.

Dr. Isola is back from his vacation. I'm glad one of us gets to leave the hospital. My white count is still low - around 200 - and will continue to be low for at least the next few days.

Based on blood cultures taken Friday and Saturday, the doctors have decided to switch the antibiotics used to fight my blood infection. They have found one that they think will work better. I'm feeling better, though. My temperature was stable yesterday and my headaches were infrequent and mild. They plan to continue taking cultures since more infections may lead to the removal of my Hickman catheter.

We are receiving updates from Louisiana. Electricity and cable are out, but phones and cell phones are still up and running. There is a lot of tree damage, and metal buildings and sheds haven't fared well. It could be far, far worse. If any of you watch NBC's national coverage of the storm, they have a reporter in Houma, a city about 20 minutes from Thibodaux. Plus you'll be able to hear all about a couple of geniuses (and their 10 year old daughter) who decided to ride out the storm in a shrimp boat. Brilliant.

August 28, 2005
Things have been a little bit rough here for the past couple of days. It turns out that I have a blood infection. This isn't unexpected or unusual, and can be treated with antibiotics. My temperature varied wildly over the last 48 hours, and I had a persistent headache. I've spent much of the past two days in bed. I'm happy to report that I'm feeling much better today (Sunday).

Other than that, there isn't much new to report here. Dr. Isola was on vacation last week, and should be back tomorrow.

I hope that all of my family and friends in Louisiana are battening down the hatches in preparation for Katrina. It sounds as though most of you are deciding to stick it out at home; we'll be watching CNN and The Weather Channel to see if any of you fly across the screen.

August 26, 2005
Ladies and gentlemen, it's official. Time has stopped. Literally - the battery on my watch died in the middle of the night. Luckily there's a cable channel here that simply consists of a giant clock. And no, I'm not kidding.

The preliminary results of my bone marrow biopsy seem to suggest that my bone marrow is clean. I do feel the need to clarify that the word "remission" was not used. The doctor said that my marrow looks clean. Next week we'll find out if the chromosomal abnormalities are still present. Remember that either way I'll be receiving the transplant.

Speaking of the transplant, the doctors have requested a more complete round of genetic testing from a possible donor. We'll know more about this in the weeks to come.

Last night we clipped off my hair, leaving me with a semi-crew cut. We did it just in time, too. During my semi-monthly shower this afternoon, my hair began to fall out in earnest. Now I look like a mangy dog. I don't mind having a bald head - maintenance is a breeze - but it is sort of freaky when it begins to fall out. Imagine the parade of brooms and buckets in The Sorcerer's Apprentice and you'll have the basic idea. No matter how much I rinse, more and more hair washes off of my head. If only there were a button to press so that all of it could fall out at once.

Finally, please don't panic if it seems like we're late with posting updates. As you know, I want to avoid mass and individual emails, and have you get reports straight from the horse's (or, as the case may be, jackass') mouth via this page. The problem with this method is that my time isn't always my own. This morning, for example, I had a transfusion, and the Benadryl knocked me out of commission for a large chunk of the day. So while the updates might not be posted as quickly as I'd like, just know that they will be coming ASAP.

Thanks again for all of the cards, letters, and fun things to keep me busy. I'm honored to have such terrific, concerned friends!

August 25, 2005
I hope you enjoyed the last update. It was actually written by an imposter! Yes, Chris Czajka - Mr. Technophobe himself - wrote and posted the last update. Just like the first runner up in the Miss America Pageant, he'll step in to keep you informed should I eventually be unable to fulfill my duties.

I had my fifth bone marrow biopsy this morning. It was totally pain free. Three out of the five have been, which is pretty good if you ask me. We should get preliminary results later today and final results next week. Unless I'm mistaken, the prelim results will tell us whether I'm in remission and the final results will address the abnormal chromosomes. We'll post news as soon as we get it.

I'm beginning to lose my hair again. I'll probably look like Daddy Warbucks by the weekend. On a related note, if anyone needs a lock of my hair for some sort of voodoo ritual, speak now or you'll just have to wait a few months.

Finally, a very special guest star made a surprise appearance here yesterday. My friend Chris Taylor was in town all the way from Australia. We went to Louisiana Tech together and hadn't seen each other in almost eight years. At least I think it was Chris Taylor - visitors have to wear masks, so it was sort of hard to tell.

That's it for now. It's almost time for lunch, so I have to barricade myself in the bathroom before they bring in my stinky lunch tray. Thanks for all of the email well-wishes. I can't really answer them all because the internet connection here is extremely slow, but I do read each and every one of them.

August 23, 2005
Nothing much to report today. We are waiting to see where my counts are later in the week, and once they are ok, it will be time for the bone marrow biopsy.

The food here at Mt. Sinai continues to be abysmal. My good friend Nicole Roberts has composed some new haikus that reflect my feelings about hospital cuisine:

Mt. Sinai food sucks.
Send a grilled chicken sandwich,
From One Fish, Two Fish.

Leukemia blows.
I need some new bone marrow.
And some better food.

Crazy man next door
Keeps me awake through the night.
Put him in restraints.

August 22, 2005
Things are pretty quiet here at Mount Sinai.except for the guy next door who alternately yelled "I'm sick" and "I'm not sick" all night. I'm thinking he's sick in more ways than he can possibly imagine.

It's official - my blood counts are so low that I am nuetropenic. Now all visitors have to wash their hands and wear a mask while in my room. Basically, it's like the world's most boring Halloween party.

Other than that, I don't have much to report. Theoretically, they'll do another bone marrow biopsy on Thursday to make sure that I'm in remission, and then.I have no idea what comes next. The doctors haven't given much by way of a timeline. I guess they're either waiting for more information or are planning an ice cream party for me. We'll see!

August 21, 2005
Hospital Haiku:

Send me no flowers
For I am nuetropenic
No raw fish either

August 19, 2005
Hello everyone! Not much new to report here. I'm feeling much better now that they've stopped giving me anti-nausea medication even when I'm not nauseated. Funny how that works!

My counts are really beginning to drop. As of this morning, I am borderline nuetropenic, and should be totally so by the end of the day. You might remember that this means my white counts are dropping to such lows that I will be at much greater risk of contracting diseases. This, of course, is perfectly normal as the chemo attacks my bone marrow. I'll also have to be on a special diet.as much as I'll hate to miss normal hospital food.

Here is the corrected Jeremy Johnson triathlon link for those of you who would like to donate money to help combat leukemia. I also promised details about another fundraiser. Our pal Tracey will be participating in a 26.2 run to benefit The Leukemia and Lymphoma Society. If you'd like to support her and the cause, click on this link to donate. Remember, every little bit helps.

That's it for today. Told you there wasn't much to report! If anything important comes up over the weekend, we'll post it here. Otherwise, don't expect to hear anything until Monday when my doctor returns from the weekend.

August 17, 2005
Hi there! I'm sorry that it's been so long since you've heard from me. I understand that a few of you assumed it meant something terrible had happened. Perish the thought! I've been doing all sorts of fun things like receiving chemo and scheming up this new way of communicating with everyone. If you bookmark this page and check back every few days, we'll try to keep you up-to-date on all the fun things happening here. Your inbox will thank you.

My last round of preliminary chemo was given last night. At Lenox Hill, I was discharged after chemo and my progress was monitored as an outpatient. No such luck here...I'll be in the hospital for the next few weeks as they pump me with antibiotics and monitor my blood levels. Not to worry, though. I have plenty to keep me occupied, like gagging over the lunch and dinner selections. I always thought that the goal of hospitals was to make patients better, but with food like this, I'm beginning to wonder.

All things considered, I'm feeling fine. My stomach is a little upset today, mostly because they insisted on giving me anti-nausea medicine when I wasn't experiencing nausea. Hopefully they won't start treating me for other things I don't have, like menopause and liver disease.

Wanna support a good cause? A couple of my friends are participating in separate fundraisers for the Leukemia and Lymphoma Society, partly inspired by my illness. Jeremy Johnson, for example, will compete in the Hermosa Beach Triathlon (including a half-mile swim, a 9 mile bike ride, and a 3.2 mile run). You can make a donation online here. I'll post the details of the other fundraiser in the next few days.

And now I must run. My dinner tray has arrived and is sitting next to the computer.which means that I need to get to the other side of the room as quickly as possible!

August 12, 2005
Howdy, all! Here's a quick update on what's going on in Mount Sinai. The Hickman Catheter was installed in my chest Wednesday with absolutely no problems. Now I've got three tubes sticking out of my chest which snake subcutaneously beneath my skin for several inches before emptying into my jugular. It kind of makes me look like the Borg from Star Trek.

Yesterday I had debilitating hip and leg pain, making it difficult to sit, stand, walk, and sleep. Apparently my bone marrow has gone into overdrive, producing so many blood cells that they're causing a traffic jam in my bones. This should go away once the chemo kicks in. In the meantime, they have me on a morphine drip. Basically, I've already taken three naps while writing this email.

Chemo began last night. I get three drugs. The first is given over an hour. The second is given over three hours. After a three hour break, the final is given over an hour. I did get sick last night, but hopefully it was related to the bone pain rather the chemo and won't happen again. It's bad enough to see hospital food once - you most certainly don't want to see it twice.

Otherwise, things here are great. The nurses are terrific, and the level of service is just as high as what I received in Lenox Hill. Plus my mom returns to NYC today, giving her yet another neighborhood to get lost in!

Jonathan "You will be assimilated" Boudreaux

August 10, 2005
Howdy all! I just want to bring you up to date on what's been going on with me health wise.

Three weeks ago, I had a routine end-of-chemo bone marrow biopsy. I got the results a week later. Although I was still officially in remission, the chromosomal abnormalities produced by my bad cells were back. Basically, that meant that the threat of leukemia still lurked in my system. In order to get rid of the leukemia for good, I would now need a bone marrow transplant (BMT). This was disappointing news, but not completely unexpected. After all, you might remember that my initial treatment would have involved a BMT if I had a related donor.

There was no great urgency, so I scheduled an appointment with the specialists at Mount Sinai for today, August 10, and went on my planned visit to Louisiana. I was in LA from Tuesday of last week through this Sunday. I had a great time visiting with family and friends while simultaneously eating twice my body weight in seafood.

Some of you know the story up to that point, others of you don't. I didn't want to completely go public with the BMT news until I had more information. Plus, I wanted the opportunity to tell my LA friends in person, knowing that what could sound like scary information in an email wouldn't be so bad if people could see how well I'm doing (with the exception of the zits that make me look like I'm going through a second puberty).

Here's where the story veers from what I had originally planned. When I woke up Monday morning, I noticed a few small bruises. A blood test at Lenox Hill later that morning revealed that I have relapsed - my leukemia is back. That's the bad news. The good news is that we will go ahead with the BMT as planned, and hopefully that will kill it once and for all.

I've been in Mount Sinai hospital since Monday night. Yesterday I had a test done just to make sure that my heart is still in good enough shape to withstand more chemo. Today I'm going to be fitted with a Hickman catheter in my chest that will allow easy access to my veins. My first round of chemo - using a different slate of medicines this time - could start as early as this evening and will run for five days. The goal is to get me back into remission before the BMT. The BMT is still feasible if I'm not in remission, but the doctors prefer to wipe it out first. With such a quick relapse, however, it may be difficult to actually get me into a second remission. Either way, I'll be getting a BMT.

The timeline on the BMT isn't clear yet because my new doctor, Dr. Isola, needs more information first. This is, however, the beginning of a lengthy hospital stay for me. I will be here for at least three weeks dealing with the first round of chemo and its aftermath. Dr. Isola says that it's important to concentrate on one thing at a time, so we haven't discussed the BMT yet. I've read, though, that they can require up to four months of hospitalization. At least Mount Sinai has a greater range of cable channels, and they don't include the exercise channel which, if you think about it, is a ridiculous choice for invalids trapped in a hospital.

There is another bit of good news - I have 28 possible matches in the national database. Some of these will be eliminated for one reason or another, but chances are that at least one of them will be a perfect match for me. It's terrific that I have so many matches. Other patients have problems finding one, much less 28. If you are a person who ordinarily gives blood, I would ask you to consider finding out if you, too, can be added to the BMT databank the next time you donate. It's a simple blood test, and you could save the life of someone out there, much as one of those 28 will be involved in the fight to save my life.

I'm not sure if I'll sail through the chemo as well as I did last time, but I'm still confident that I'll be able to lick this thing. My spirits are as high as ever. Hopefully the chemo will knock out the acne, too.

We'll try to give updates over the next few weeks to keep you informed about where we stand. We are rethinking, though, of changing how information is transmitted, and we may experiment with setting up a Web page that you can access for updates rather than relying on email. We'll let you know soon.

It looks like 2005 is shaping up to be my year of leukemia. Let's hope that my current treatments make 2006 and beyond 100% cancer free.

Jonathan "Soon to be Bald Again" Boudreaux

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