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Archive for June, 2009

Bone Marrow Update

Hey, it’s everybody’s favorite subject, bone marrow! I already told all the grisly bits in The Story So Far part 2, so today I can move on to the results, which I got only a couple of hours ago. I won’t bore you with the details of the hospital visit, as they mostly consisted of me waiting, and skip right to the good stuff.

My red blood cell count has dropped to 4.8 thousand parts per million, which is just above the low normal (and where the doctor wanted the numbers to be). My red blood cell count is 11.2 thousand parts per million; normal is 14 and Gleevec (the Leukemia drug) paitents usually top out at around 12. This makes sense, as I feel good and have energy for walking around, working on the computer, and other low strain activities, but once I don’t have much endurence or capacity for high octane stuff. However, I must clarify, I never had much capacity for these things, being a rather inactive, thinking-heavy person who hates to excorsie, but now I have a bit less of a capacity. Or at least an excuse. But back to the results. There are no blast cells (super mutant cancer cells) in my bone marrow, which confirms I am in the Chronic phase of the Leukemia, which, with the medicine, should stay that way. I won’t go into the detials of the Accelerated or Acute phases, but lets just say I wouldn’t be typing this right now. So that was I huge releif, even though I was 99% sure of it anyway.

Also, in addition to the classic Leukemia genetic indicators of gene 9 and 22 being fused, there was an additional abnormality: gene 8 was also fused to the 9 and the 22. Aparently, the breaking and consequently fusing of gene 8 is the most common gene malfunction, and has not immediate threat on it’s own. However, with other forms of Leukemia it can tell white blood cells to reproduce like crazy (like the fusion of the 9 and 22), so Dr. Goldberg is going to monitor gene 8 just to make sure this does not happen. The last thing is that my platelets are low. This is astandard reaction to the treatment, and most paitents platelets swing back up after 6 or 7 weeks of treatment (I’ve been on treatment for 5). So I have an appointment in 2 weeks to check on my platelets. Hopefully I won’t be a bleeder. The big test is at the 3 months of treatment mark (so mid August), which is when they check my blood  and do an in depth cell scan (the details are beyond me) of how the cell are responding to the treatment. This is what’s known as the first benchmark, as research shows that it takes about 3 months of treatment before any conclusive results can be drawn. I have another 2 such benchmark tests in the first year, culminating in another bone marrow test (Yay, needles in my ass!).

So thats the latest. I go to my first day of work in 2 months tomorrow (I only have 2 appointments, or 2 hours of work), and on Wednesday I was invited by my friend Zack Dettmore to a show for the Friends and Writers of the Daily Show at the Comix club in NYC (Zack’s father works for the Daily Show – score!). So I’m really excited about that. I’ll give updates on those, and other, things as they arrive. Oh, and I’m twenty three years old! Thanks to everyone for keeping me alive and out of sewers.

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Get a Job

Well hello folks, just a short post this time.

It’s happened. I feel practically myself again. I’m free from pain, my energy is up, and my mind is limber. The only things different is that I don’t have quite as much energy as I used to, but since I barely do anything physical anyway, I hardly notice. Although that reminds me, I should start exorcising. My muscles have atrophied far enough, and my stick-like figure freak a lot of people out. Also, my hugs occasionally cause puncture wounds. Although, come to think of it, I’ve always been skinny, and so has my dad, and so has my granddad, so maybe that’s just me…but they have muscles and things, and aren’t so bony. Alright, point is, I should exorcise, but now I’ve completely lost my point.

My point is, that I feel practically myself, and that I can return to work. This is nice, because my savings will only pay college loans for so long. It’s also nice because I feel like I’m pulling my weight again…although I’m not working yet, so I should save that feeling for later. The bad news is I’ll have to go back to Bergen for now. Don’t get me wrong, it’s a great little part time job, but right after the Fall semester ended, I was really ready to move on, and it feels kind of lame to go back. Well, life intercedes, as they say. I really can’t commit to beating the road looking for jobs right now, Leukemia-based circumstances dictate I take it slower, so the Bergen gig will be good until I find something better. That is a really great thing about my Leukemia experience; I’ve slowed down a lot and really appreciated what I have and what happens day to day. I really feel like I’m living, instead of just passing through.

At any rate, I’ll send an email to Bergen tomorrow and see if I can still get my old job back. I’ll keep yall posted! Peace.

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The Story So Far part 2

Welcome back to part 2 of the Leukemia story! After this I’ll write about something else, I promise. If you missed part 1, I highly recommend checking it out, unless you like being confused.

I arrived at the beach to a full brass band and a legion of bikini-ed women all screaming my name. True, I am exaggerating heavily, however it felt like that happened. It wasn’t particularly warm, and it drizzled occasionally, but it was still great just to be out in the open air and hear the waves. Flash forward a few weeks and I was feeling much better. My energy was still low, and I puked a couple times from the Gleevec, but all and all I was feeling good. I was hanging out with friends and having fun, so it was badass.

We had gone to see a couple Leukemia specialists in the state, including a Dr. Orsini at Clara Maass. His facilities were very nice, but what immediately turned me off in the waiting room was a huge cardboard display showcasing Dr. Orsini’s selection as one of the top doctors in the state by New Jersey magazine. However, the article has a disclaimer at the bottom, “Special paid advertising,” meaning that Orsini had essentially paid to be featured in the magazine. Dr. Orsini himself was jovial and looked like he had had plastic surgery, and kept making decisions for me. When I slowed him down and asked him to explain the things he was yammering about, he gave rather aloof, doctorish answers, but gave them in a friendly, stylish, Leukemia Specialists of the OC kind of way. So we didn’t go to him.

Over that weekend, my energy really dropped. My previous doctor visit (still at Holy Name) had revealed that I had a low red blood cell count (anemia), and my doctor, Dr. Pieczara, was pushing heavily for another blood transfusion. When my energy dropped, my mom called Holy Name and asked for me to be admitted into the emergency room for a transfusion. The emergency room had to be used because it was the weekend. I didn’t really want to go, but I was feeling rather apathetic in that moment, and decided to just go along with it. So I wait in the emergency waiting room for 2 hours before I’m finally called in.

My room was tiny, brown, and windowless, with harsh yet somehow murky florescent lights. I changed into the ass-out blue gown they give you, and just sat on the bed not wanting to be there. After around 20 minutes of waiting, the oppressive atmosphere, combined with my not really wanting to go in the first place, on top of my cresting conviction that my red blood cells would come back on their own and another transfusion was reactionary at best and not worth the added risk, convinced me to leave. I changed back into my street clothes, took a peak right and left down the hall, and walked out of the hospital. I passed an orderly on the way out, but I just looked like I was supposed to be there and walked right by. I called my dad for a ride, and he was less than happy that I just walked out without saying anything to anybody, but I felt that if I had said anything they’d try to convince me to stay and I’d somehow end up doing so. Plus I was pissed at them for making me wait so long. Later on I had to explain the whole episode to Dr. Pieczara, who I could tell thought I was a loony, but I stood my ground and it all worked out.

The very next day, Monday, I went to see another Leukemia specialist, Dr. Stewart Goldberg at Hackensack Hospital. Let me tell you, this man is incredible. I learned more about CML in one hour with him, than I had in the previous three months. His bedside manner was caring and empathetic, but direct and very well educated as well. He apparently leads many nation studies and research projects on the cutting edge of Leukemia treatment, which I can only benefit from down the road. I won’t go into all the gory details of how CML works, or how it’s treated, but I will say that my prognosis looks very good. However, he also showed that Dr. Pieczara and Holy Name had miss diagnosed me. They thought I had accelerated phase CML, which means your cells start degenerating and multiplying  and mutating really fast, and many of the cells (called blasts) don’t respond well to the Gleevec. I had the chronic phase, which is much less serious and treatable. Essentially the only thing that changed was my Gleevec dosage; instead of taking 600 mg a day, I now take 400 mg. It also showed that Hackensack > Holy Name.

Skip ahead another week (today, Monday June 8th 2009). I had to go in to see Dr. Goldberg again to get a bone marrow biopsy. The reason for this is so they can check the number of leukemia cells in the marrow itself, which really determines exactly how far along the disease is and gives them lots of doctor information for treatment. The crap part was that they have to stick a giant needle into my ass bone to get the marrow. After waiting for over 2 hours, the procedure is about to start. Dr. Goldberg describes the process in detail, my dad looks queasy and leaves the room.

I lay on my side and face the wall as the hot nurse pulls my pants down to a plumbers crack level. Dr. Goldberg paints my hip with iodine, just above my left butt cheek. Then he sticks me twice with Novocain in the skin, and once in the bone, the latter of which hurt generously. At this point my legs were vibrating, and the nurse was holding my hand telling me to take deep breaths and to lower my heart rate. Then Goldberg pierces my flesh with an 1/8th of an inch needle. I didn’t see it, and because of the Novocain, didn’t feel it. Then he pierced my bone. I nearly shot off the bed as I felt an excruciating “thunk, ca-clunk” of the needle penetrating to my marrow. The pain was intense as he pulled the marrow out, but not nearly as bad as the initial puncture. As he slowly pulled the needle out, I felt something cold a wet running down my butt, and realized I was bleeding rivulets down my crack. Finally, the needle popped out, and the hot nurse wiped my ass and comforted me. I felt very grown up and asked for a glass of apple juice.

It’s over! And I won’t have to go back for another one for a year, and after that, never. Adding to the good news, my white blood cell count hit 9 thousand parts per million, which is within the normal range! Normal normal is 4, which is my target, but at this rate I should be there in a few days. Also, my red blood cell count is at 10 thousand parts per million. The normal is 14,a nd people on Gleevec usually plateau at 12, so I should be “normal” in a month or so. Finally, my sister got her driver’s license! Be very afraid. I will get my bone marrow test results back by this coming Friday, so more Leukemia news then. In the mean time, since I’m caught up on the story so far, look forward to posts about things other than Leukemia! Until then, this is Chris, signing out.

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The Story So Far part 1

Well, here it is, the only marginally abridged version of The Leukemia Story. Now, since I’ve written it here, I’ll only have to repeat it for the rest of my life. Here it is!

I was diagnosed with CML somewhere around mid to late April, 2009. I first noticed something was awry when it occurred to me that I felt like crap. Using this clue as a springboard, I soon discovered that my stomach was swollen and tight, as if I were clenching all my muscles. From these pieces of evidence I quickly concluded that I was weird, and attempted to forget about it for almost six months. Finally, my acupuncturist insisted that I go to see a doctor.

So I went to my family doctor, Dr. Jodi Katz. Only Dr. Katz had moved to another medical facility, so I was instead transferred to Dr. Schwartz (female). She was a middle-aged woman with a rotund figure and short cropped brown and gray hair, and a Israeli accent. She felt my stomach and decided that it was weird, so she sent me to get an ultra sound, and also to get a blood test. So I went and did both, and the ultra sound confirmed right away that my spleen was several times larger than it should be. In fact, it took up almost my entire left side, from ribs to navel.

About a week later, I was staying at a friend’s apartment in Brooklyn (they were away at the time) when I get a call from the blood technician, who immediately asked how I felt. Now, when health care professionals start caring about the state of your health, you know some thing’s up. But the tech wouldn’t tell me anything over the phone, just insisted that I stop whatever I was doing and go to the clinic. It was a Sunday as I recall, and I did have something planned, but decided to haul my ass to the clinic instead. So I hopped a subway and then a bus home to NJ, and from there my mom and longtime friend Xaq and his dad Bernie accompanied me to the clinic.

Since it was the weekend, Dr. Schwartz was not in, so I was assigned a random weekend doctor, who told me and everyone else that my white blood cell count was 256 thousand parts per million, while the high normal is 10 thousand parts per million. High white counts are indicative of cancer. That was the shock time, knowing I probably had cancer. Forget what type, just the word alone was numbing. My mom and I had a good cry in the parting lot, and then Bernie cracked a joke and we felt better.

Fast forward almost a month and a butt load of tests later, and Holy Name Hospital confirmed I had CML, and my white count had jumped to 384 thousand parts per million. Holy Name had no Leukemia specialists, and instead assigned me an Oncologist, Dr. Pieczara (female). They started the treatment on Gleevec while we looked for a suitable specialist in the area.

Gleevec is the wonder drug of CML, and is the fastest approved drug in FDA history. Without getting too much into the nitty-gritty, it essentially targets only the mutated cancer white blood cells and eliminates them, leaving the rest of the healthy cells alone. Because of this targeted approach, Gleevec’s side effects are mild and it’s toxicity footprint is significantly lower than “traditional” chemo. It’s also way cooler than a bone marrow transplant, which requires a full year of inactivity and being brought to the brink of death via literally pounds of chemo, plus auto immune disorders for the rest of your life! Didn’t sound fun, and what doesn’t sound fun, should generally be avoided.

To start on Gleevec I had to be hospitalized so they could hook me up to a IV which would ensure that my kidney’s flushed the massive amounts of cancerous white blood cells the Gleevec would kill. I had my own room, and the food was catered by the Marriott hotel, but other than that the experience rather sucked.

They pumped me with 150ml of water every 6 hours, which meant I had to whiz every thirty minutes. And this was no wait around ’till your ready whiz, either. This was, “Unleash the waterfall now, or your bladder will explode!” whiz. I also had to wear a silly blue gown, and nurses would wake me up regularly throughout the night to check my temperature. Unfortunately my temperature was always high (a common and mostly harmless Gleevec side effect), but hospital protocol insisted that they immediately take blood cultures (as 4 am) to see if I had an infection. After three days in a row of this with infection results coming up negative, and an infection specialist personally giving me a clean bill of health, the nurses still blindly went along with the blood culture policy, until I figured out I could refuse “treatment”. Even then, they snuck in the blood cultures while my normal blood was being drawn.

The good part was, that everyone came to visit me in the hospital. My parents were almost always there, legions of my extended family showed up, and lots of friends piled in as well. This was all very wonderful and much appreciated, and made the time go much more pleasantly than just sitting around and waiting to pee. But finally, after five days and a lot of movies and books, I was released. My white cells were down to 125 thousand parts per million. After that moderately harrowing experience, I was ready for some sun, so I immediately hit the beach! But that’s a story for part 2!

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