My Leukemia Story
IS BALD BEAUTIFUL??
March 21, 2010
I’d like to think so. As that’s my current “haircut”. Actually, it was more like the hairstyle chose me than the other way around. You see, I’ve not been really active on twitter or facebook for a while as I was not comfortable yet sharing the news to the public that I was diagnosed with Acute Myeloid Leukemia not too long ago.
Before I get into the history of it, I’ll put out the good news. The Leukemia is in remission(less than 5% bad white blood cells -started out at 75% bad) and I’m close to getting a bone marrow donor for my upcoming transplant…so all is fairly good now. The other good news…I lost 20 pounds…hell of a way to do it, but I fit into my mediums again, woo hoo!! The photos below are a snapshot of where I started off and where I am now…
I started out here…first few days in the hospital. Wasn’t too happy in that first shot…but I think being a little moody early on is expected. I’m getting an EKG here in the other two photos. I was on oxygen for the first week or so.
I’m about midway though the 44 days here. I started losing the hair at this point, but the Goatee was still hanging around. It’s funny, I didn’t start losing my hair until 3 weeks after the chemo ended. No loss of arm hair though…kind of interesting…probably should shave down that beast anyway…lol.
Fully shaved the head as the hair fell out a little uneven. This is what I look like right now…so what do you think of the new look?
In the beginning of this process, I just wasn’t up to sharing this with everyone as it’s a lot to take in and digest for one’s self. I mean, damn…I’m 35 years old and got cancer…kind of a shock in the beginning(and I felt terrible)…But now that over half of the treatment is over and I’m physically stronger again, I feel it’s time to share this with my friends and colleagues that may not know yet. If for no other reason to tell everyone to go out and get health insurance if you don’t have it now. Luckily, I have a very good health plan and everything is paid for. This thing could end up costing upwards of $500,000. I don’t think I would have gotten the treatment I needed if I didn’t have health insurance. In our industry as a whole, I think many of us just play ignorant about it because it’s too expensive and we’re relatively young, going with the,”nothing can happen to me” syndrome. Well, this is just a friendly reminder from me to you that strange things like this can happen to anyone at any age. Better to have a little less to spend and have the insurance there if/when something serious happens to you.
It all started with a really bad cough that lead to my family doctor giving me prescription meds for it. After two weeks of taking it, still no improvement. So, I went back to him, told him it’s not better, I’m actually feeling worse for the wear. General fatigue, cough was still bad…overall, I felt pretty shitty. So he ran a blood test and by looking at the results, said that it would be best if I went to see a Hemotologist(blood specialist) for further tests. I was recommended to an amazing Doctor, Dr. Dana Shani. We did a blood test in her office, I got really nauseous, almost passed out(which I never do giving blood)…she put the blood in my pocket, called an ambulance and I was in Lennox Hill Hospital 30 minutes later checked in for the long haul. My white blood cells were extremely low and my blood platelets were 13,000. The normal person has around 450,000 platelets. In short, my immune system was crashing. The next day, I was in Lennox Hill hospital for what would be 44 days of treatment. For 12 days of that, I was on a 24 hours/day Chemotherapy IV drip. One 7 day set, and another 5 day set later on. Luckily, that put me in remission(which is a temporary condition until I get a bone marrow transplant).
I’ve finished up my third round of Chemo not too long ago. It’s much stronger than the other two sessions. They call it the consolidation Chemo as it’s the last one that happens right before the bone marrow transplant. That has not been scheduled yet, but should happen in the next month or so.
Getting Chemo now is not as bad as it’s been in past years as they have medicines that they give you in concert with the chemo that prevents the two worst side effects, nausea and vomiting. So really, it hasn’t affected me that much in terms of discomfort. The loss of hair is different, but I don’t mind it that much really. I’ve been in boot camp when I joined the Navy, so it’s nothing new to me. They shave your head pretty good there. :)
These photos were taken by a friend of mine, Stephen C. Downes when he came to visit. As expected, I turned my hospital room into my virtual office…even having messengers coming and going delivering files and such. Hey, you do what you need to do to keep the ship running smoothly. Business doesn’t stop if you have the means to keep it going…
I’ve got some people to thank:
First of all, Dr. Felix, my family doctor that found the problem and passed me on to such great staff over at Lennox Hill. Dr. Shani, as I mentioned above, is amazing and has made this treatment as smooth as possible…she’s quite a character too with a great sense of humor. Her team of Dr. Malek and Dr. Ruth helped me keep my spirits up and got me going through it all. All of my nurses were incredible. I have a whole new respect for all of the hard work they do. Thanks guys.
A HUGE thanks to my family and my girlfriend Maria, without whom I would not have gotten through this. Maria has been a rock of support in too many ways to count. She brought me real food when the hospital food was just really not cutting it….lol. Also, my family from all over sent their love/prayers and support. Trust me, I’m using all of those prayers sent. My mother, father, and sister have also helped out tremendously throughout the process and continue to help every day. My sister even stepped forward to be a donor(unfortunately she wasn’t a match). They all helped out when I was gone for New years…I had rented my space out for New Years Eve and had to coordinate everything from the hospital with them on the ground making the event happen seamlessly. Without them, I could not have done it. It’s nice to know that when the going gets tough, that your family and friends are there for you. I think having a good outlook on things and a good support system around you helps one get through things like this. Thanks for everything guys!!
Lastly, many thanks to my wonderful clients that have kept the scheduling going made the financial side of this so much easier to bear.
So thanks for reading my recent life update. I’ll update more when the time comes, but now you know why I may have been a little quiet online for a while. I’m looking to do some new/fun shoots coming up…still life, men’s women’s, whatever…hit me up and let’s create.
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.
Took a new self-portrait to mark this phase of things…
April 29, 2010
Part I of the Video blog update…
Me waiting for the radiation guys to get me…
THE MISERY & THE MAJESTY
May 20, 2010
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(Edited to add…now my Wife!!) :) , 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.