Tag Archives: sloan kettering

The Misery and the Majesty

Ok, so here’s the part where I say, “sorry about not posting more videos”…It was a little harder than I thought to get motivated to do these little productions when I was going through some of the radiation and Chemotherapy treatments.  It all went really fast though.  It was 4 days of Radiation, 4 days of two types of Chemo and then the next day…Transplant!  So it was a little fast and furious when it was happening and not without it’s miseries.  The 11 radiation treatments gave me a sunburn on my entire body(yes, there too…lol).  So itching and redness were what I had to go through there, plus some general discomfort.  The next Chemo, Cytoxan was so strong that I was told to shower at 1 hour after the drip finished and also at 5 hours.  Apparently, it seeps out of your skin and can give you a nasty rash if you don’t shower it off quickly.  So then…on to my favorite Chemo, the Rabbit ATG.  This one is the death knoll for my old, flawed immune system.  The reason for the rapid fire radiation/chemotherapy treatments was to get my immune system to Zero.  By the beginning of Day 2 of the Rabbit Atg, my White Blood Cells were only at .1.  By the end of the day, they were gone.  I was more fragile than a newborn baby right then.  I had no immune system at all.

So the next day they decided to get right to the transplant, moving it up a day early.  It was very anticlimactic as the whole procedure took 8 minutes in my hospital room.  Stem Cell technology is a beautiful thing and so are all of the amazing doctors and nurses that have cared for me this whole time.

The 1st night after the transplant, I was seeing double vision, chills, sweats, and some weird out of body experience that I still don’t understand.  Who knows, it could have been the stem cells moving around my system mixed with all the different meds I was on.  It was a rough night.  I had a bad fever that night as well.  After the right meds were pumped in me, I woke up fine the next morning.

The next days were kind of a blur of sleeping and being pissed off at this drug, Palifermin.  It prevents mouth sores that are common after radiation and chemo.  My face blew up, my hands blew up and I was really red…not fun folks.  It took about four days off of that drug to come back down to normal.  After that though, the ship started sailing straight, hard, and fast.

I went onto TPN, which is food they give to you intravenously.  All of the treatments screw up your mouth, throat, and kill your taste buds completely.  So the last thing you want to have to worry about is trying to get some food down.  The TPN helped out tremendously for a few days.  Once I was up to it, I requested it be removed so I could start getting ready to leave.

Here’s the best part.  It takes about 10 days after the transplant to show any life in your white blood cells.  For those days, you’re just waiting, waiting…hoping that the transplant worked.  The Day I got my first WBC(White Blood Cell) # it was .4.  Much higher than the .1 they expected.  Then the next day it shot up to 3.  The day after that it was 14(normal range is usually from 5 to 9).  So you could see right away that I had a wonderful doctor, Dr. Papadopoulos, that picked a great donor for me.  That isn’t such an easy task at all.  I’d like to give another shout out to Dr. Shani and her team that were able to get me to a place where Memorial Sloan Kettering could take me in for the next steps. Both the Lennox Hill and Sloan Kettering doctors and nurses were amazing.  I would highly recommend either hospital.  Photographers, if you’re looking, google Jill Krementz.  She’s a volunteer here and has shared with me some of her amazing photojournalism work and time.  Thanks again Jill for coming by.  sample of her work: Teddy Kennedy
So here I sit at 1 in the morning writing all of you about my little adventure…guess what…I’m going home in the morning!!  The docs say I’m doing great and it’s time to move onto getting stronger at home.

So that’s the little story behind the second half of a monster health issue.   Here are some photos that I took along the way…


These two images were from my window at night…not a bad view…

This was one hell of a bad day for me, dealing with the Palifermin drug…I think this is me at my worst, most puffed up.

Staring at the ceiling…did a lot of this. 😉

Ok, I had to do my usual hospital iphone self-portraits.  It’s easy and kinda fun. 🙂  Those images and the two below were taken on my last night at the hospital.

Ok, for this one, I have to say that I’ve been watching PRISON BREAK on Netflix and had to give it a shot. I look like a total criminal here…kinda dig that. 😉

And….I had to save the best for last.  My beautiful, Angel DONOR wrote me a letter that just goes to show you that there are good people out there.  This is so amazing to me that someone who doesn’t know you, but knows your sick, and they can help.  Indeed, she wanted to be my Donor.  God Bless you(no names are allowed until 1 year after the transplant).  All correspondence has to remain anonymous(thus the blackout areas on the paper).  It brought me to tears when I read it.  It makes you want to go out and do something for someone in your life that is in need…

 

Without my mother, father, and Girlfriend Maria, I would not have gotten through this as well as I have.  I wish I had a photo to post, but they’re all on your cameras….parents!  Give up the photos and I’ll post a few.  Here’s one of Maria. 🙂

 

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Radiation Nation

Part I of the Video blog update…

Me waiting for the radiation guys to get me…

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Immune System Swap. ;)

As all of my posts have photos, I thought I would add one that I think symbolizes this new future of mine.  I took it in Vegas when on a trip with Maria and David Widjaja for Vegas Magazine.   That Cirque Show, Le Reve was amazing…and David/Glenn, thanks for visiting me in this hospital the first go-round…miss you both.

#1, Thanks for everyone that has wished me well, prayed for me, lit a candle, had sex in a dark alley for me…ok, well, maybe that wasn’t for me, but thanks anyway…It was still good for me. 😉

I thought it was time to give everyone a Leukemia update…

So anyway…it’s down to the Transplant wire now…I have a donor now and the transplant is only a week away.  I’m going in the hospital on the 19th of April.  I’m busily trying to get a bunch of shoots in the can, work shoots and editorial, before I go in the hospital for the next phase.  When I go in again, it’s going to be right into the fun stuff…4 days of radiation, 2 days of Chemotherapy(sounds more like a mud bath than some crazy cancer treatment, no??…lol).   Then, a day off…then the transplant.  The whole goal of those 6 days of treatment is to eradicate my immune system completely, so that they can give me the new one…the one from my donor.   It’s kind of like an oil change, but for people. 😉  I’ll even take on the blood type of the donor, which is a little like changing your fingerprints…a little strange, but makes total scientific sense.

The best thing is, I get my own room at the hospital…bigger than the last one.  I can decorate as I wish.  Maybe I’ll print up some of my Evolution work to freak out the nurses.  The reason for the single person room is that for quite a while I’ll either not have an immune system at all(and will be at high risk for getting anything), or…right after the transplant…I won’t have the immune system of a new born baby.  It’s that kind of fun.  The Donor’s marrow/blood will “graft” to  my system and begin taking root, if you will, slowly over time.  Around a month or so after entering the hospital for treatment, I’ll be let go(based on how I’m doing of course) to continue my healing at home.

So once again, James Weber Studio is going on the road.  The studio will stay open and hopefully busy with my friend James Sullivan manning the helm for the studio rentals, business should continue somewhat as normal here.  The studio website is:  http://www.studio225chelsea.com (shameless plug…lol).

I’m taking my computer so that I can do emails and photoshop work…as well as the occasional movie/video/game and Pandora to keep the musical soul going.   I’m a huge fan of Audible.com, so if you have any audio book selections, please feel free to send them my way.  I love a good book, and it’s a great way to pass the time while retouching or other multi-tasking.

Big advance shout out to my girlfriend Maria, my Mother, Father, Step-Dad Frank, and my Sister for their love and care in the upcoming hosp. stay.  This one’s going to be a doozy, and they’re going to be right there with me.  I appreciate all of you greatly.  Larry, next door, also has been there for me through the whole thing…thanks, bro.

Connectivity:  It’s not like I’ll be far away this time, as I’ll be active on twitter/facebook/email, etc.  My phone will still be my cell, 917-882-3724, so feel free to call if you like.  I’ll have the time, believe me…I’ll be crawling up the walls trying to get out of that room after a while I’m sure…lol, so get in touch if you like.  Visitors are welcome, just call in advance.  For a while it’s going to be mask and gloves when the immune system is at it’s most vulnerable…but visitors are still welcome.

Lastly, this and the next two blog posts are all new, so check ’em out.  I also moved my blog from blogger to http://www.wordpress.com.  I’ve got a new Evolution update and another beauty shoot that I did recently…I’m liking wordpress so much better.  I found a theme which allowed me to add larger photos, so feel free to swim around the new blog and see what you think.  I like the categories section…which is pretty self explanatory, but blogger did not have…

Took a new self-portrait to mark this phase of things…

 

James Weber 2010

Speak soon,

James


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