Embarassing Moments for Frogs

So remember that screenshot I posted of a cartoon I said I was going to finish in a week a month ago? Well, I finally finished it.

All two minutes of it. Here it is, and let me know what you think! Thanks.

Also, on a leukemic note, I have discovered the reason my platelet and neutrophil levels were so low was that 400 mg of Gleevec was too high a dose for my body, and hence the stuff zapped my bone marrow so it is currently not making much of anything. My reds, whites, platelets, neutrophils, and a half score of others are all really low.

However, not to worry, as I’m currently off Gleevec for three weeks to let my bone marrow bounce back, and in the mean time I’m getting weekly infusions of platelets. After three weeks the docs will put me on a reduced dose, which shouldn’t toast my bones, and I’ll be able to be cancer-free and have normal blood!

Until then, check out my little cartoon.

Gleevec’s out

Good news!

I got the first half of my test results back this Tuesday (the bone marrow test), and they show I have no blast cells in my marrow, which means I am still in chronic phase, and not accelerated or blast phase.

This diagnosis has many advantages, chief among them being not having to rush to get a bone marrow transplant, probably from my sister, which is an operation we can both live without. What the test showed was that the Gleevec had worked in that it put the leukemia into remission, but it also did a number on my bone marrow, frying it to the point where it’s not making any platelets or neutrophils.

Basically, the drug whacked out my immune system and made it a lot easier for me to bleed, and keep bleeding. Hence, I am have been taken off Gleevec, and am currently waiting on the second half of the test results (the bone chip biopsy) to determine which new drug I will be put on. These results should be in by tomorrow, at which point I will also be going in for a blood test to check my platelet levels, and I suppose if need be, pump me with more.

So until that time, I am not on any medication, which for those wondering, will not cause the cancer to leap back with a vengeance; chronic phase is called that because it is very slow moving, and a few days off the drug won’t really do much. And that’s the word for now.

Eat good and sleep well!

A Change of Meds

The warmest of hellos! Some of you may have heard about my experiences last night, but for those who haven’t, and those who haven’t heard enough, I give you this explanation.

As I mentioned in my post Bleeding and other things, my platelets have been low as a result of my medication. This condition is supposed to clear up in a month or two, however at the time of my last doctor’s visit, they were still low. The normal is between 130 and 200 thousand parts per million, and mine were hovering around 55 thousand. This was lower than my doctor would like, but the number was not unheard of at that point in treatment, so he decided to wait and see if they went up. Flash forward two weeks, and I’m bruising a lot. I had little marker dots all over my legs, indicating broken blood vessels, my lips were constantly breaking, and I had various other black and blues all over my body. So, in my infinite wisdom, I figured everything was cool. Then I kept bleeding, and I figured I’d better call the doctor.

Hackensack Hospital has a special number to call for questions, which are answered promptly by a nurse.  I called this number, told the nurse that I was bruising, and he told me, in his infinite wisdom, to be careful. So I went around being careful, but I was still bruising and bleeding from the nose and lips (which, if you’ve never seen, is highly attractive). I called again, and this time I got an appointment for a week later to check my blood, specifically for platelet levels. Flash forward to last night.

I go in at 1:30 pm, and they hit me with a finger stick, which is this little needle they zap into your finger and then message out a tiny vial of blood. I said hi to all the nurses, we’re friendly now, and went to go wait in the waiting room. Surprisingly, I wasn’t there long before the head nurse called me. I knew something was up because she asked me how I was feeling. As a rule, you should always be on your guard if someone in the health care profession asks you how you’re feeling.

They didn’t hit me with the platelets right away, instead pumping me with saline solution, which is almost identical to the body’s natural fluids, and is used to keep the vein clear. While this was happening, the head nurse came back in. She explained that Goldberg really did not like the numbers. If my platelets and neutrophils were as low as they were at this stage in the treatment, then something was wrong, and the Gleevec had “failed me.” Basically, the side effects were unacceptable, and I was going to be switched to a different medication. However, they had to do another bone marrow test to figure out what the problem with the low counts was; either it was a side effect of the Gleevec that my body could not normalize, there was some other problem separate from the drug and the cancer, or I had reached accelerated or blast phase of the disease. My blood did not indicate the advanced phase, but they needed to check the marrow to make sure, because in that unlikely event, I’d pretty much have to go in for an immediate bone marrow transplant (which would suck, by the way).

For those with good memories, the bone marrow biopsy involves jamming a giant needle into my ass bone, so needless to say I was less than thrilled at having this procedure done to me again when I wasn’t even expecting the IV. I don’t know what it is about my ass that makes doctors want to stick needles into it; perhaps there’s a bulls-eye I am unaware of. Again I lay in the fetal position (for better access to the bone, I suppose), mooning everyone and holding the nurses hand as a dude got inside my bones. Again the nurse wiped my ass, and again I got a glass of apple juice.  At that point it was almost six o’ clock.

The nurse gave me benadryl and tylenol so the platelet’s antibodies wouldn’t kick my ass, and started feeding me platelets (not literally; through the IV). An hour later I was done and went home, but not before  I started a miscommunication with my mom in which she thought I was actually admitted to the hospital, and not just having to stay there for an extended period. This resulted her getting me food, changes of clothing, and calling everyone she knew to tell them where I was (except I wasn’t). For anyone still operating under that misconception, please be aware of reality.

I get half of the test results this Tuesday, and the other half in a week or so, and at that point I will change medications, which hopefully my body will tolerate better (In the mean time I’m still on Gleevec). I did call my sister to let her know that the hospital will call her and send her a DNA kit (essentially just a toothbrush) to find out if she’s a good genetic match for a transplant. This is the unlikely worst case scenario, but like doctors and boyscouts always say, you have to be prepared.  I really don’t think I’ll need the transplant, though; I mean, I feel good, and its only been a little over a month since my last test, which showed clean marrow. I also just have a good feeling.

Now I am resting at home, and feeling good. I’ve listened to a lot of p-funk to keep things on the groove – The Motor Booty Affair, Mothership Connection, and Back in the Day: The Best of Bootsy – in addition to the Spinal Tap soundtrack. All is well. I will keep everyone posted as things develop. Until then, may butts and needles never meet – amen.

Insurance dun dun duuun!

Big news! Finally, this blog ties into current political events, a major goal of mine for at least five minutes now. That issue is, as you may have surmised from the title, health insurance.

This is a very sensitive subject, especially with Obama trying to pass reform, congress being a bunch infighting legislation blocking windbags, and the number of people still without insurance reaching the high gajillions. I don’t really want to get into that, since I’d go on for far too long and say nothing that hasn’t been said before, but sufficed to say that health care is messier than Mark Sanford’s love life. Although at least his wife gets a book deal: I Never Thought it Could Happen to a Governor’s Wife: The Jennifer Sanford Story.

But I digress. Since I have had leukemia, health care has gotten really real for me really fast. Before I was diagnosed, I was hardly ever sick, so the concept of health care never really entered my consciousness outside the purely academic. Yet now it’s a whole different ball game. Health care is something that’s vital to my continued existence, so naturally I think about it from time to time. When I was diagnosed, I was still under my dad’s health care plan, which is incredible because he works for the state of New Jersey. For those who don’t know, state workers get kick ass health insurance, especially if you’ve reached middle management, which my father has. And when I say this health insurance is kick ass, I mean it kicks ass. I don’t want to give away numbers on the internet (Look, free numbers! On the internet!), but if an average-sized suburban house represented the cost of my medicine without health insurance, then with it I’d pay a grape (The grape must be a red Aubun wine grape; anything else will render this very precise analogy inaccurate).

So I had great insurance, for which I was very grateful. However, the insurance only lasted until December of this year (2009 for you archive crawling future people), six months after my 23rd birthday. Obviously I started thinking about ways to cover myself once the winter came along. My job at Bergen Community doesn’t offer health insurance; in fact, they limit your working hours to 19, just to avoid state law requiring anyone working over that amount in a government subsidized institution to be paid health benefits. The next logical step was to find a new job, but job searching is hard enough without a doozie of a deadline (I am looking, however). Finding a private insurer would be difficult as well, since I have a big old pre-existing condition. So I did some research and found out that I likely would not qualify for medicare (For reasons I cannot at this moment remember), and could not even apply until after my current health insurance ran out. Finally my dad and I figured out that I could stay on his insurance plan if I bought into it, paying about $250 a month for the same coverage I then currently had, minus dental, or $500 for the whole package. This was great, as it wasn’t all that much for health insurance, and I probably couldn’t get any better coverage anywhere else.

A good deal, right? Well, it gets better. My Hospital offers a service to get insurance companies to cut cancer patients some slack. They submitted my test results and some sort of claim, waved their magic wand and POOF! Blue Cross Blue Shield is now extending my health coverage under my father, free of charge, until 2011. YES! I don’t have to think about health insurance for another two years! For this, I am eternally grateful. This is a really tough time to have something wrong with you, and I really lucked out. My mother asked me what I learned from all this, expecting something spiritual I imagine. I told her I figured Blue Cross Blue Shield didn’t want a middle class white kid to die of a treatable, yet still dramatic illness on American soil. That would just look bad. If I had been a poor black kid…My mother said this was probably true, but beside the point. The thing I was supposed to have learned, and I quote directly, is, “To stop fucking worrying”. My mother. Said this. My mother, the reverend, the yogi, the spirit master, the religion aficionado, the God communer, the holy woman, the pure acolyte, said fuck. And now, she expects me to stop worrying.

Thus we go into the world, bold and clueless.1

  1. Some random line that insisted on writing itself, and thus including itself in this post. ↩︎

Bleeding and other things

Hello folks! So a more formal update is in order, I believe.

So I get a call from the hospital the other day and get the full fatty (my new word for skinny) on my health at the moment. As I mentioned in my last post, I passed my first benchmark with flying colors, but for those interested here’s the breakdown. When I was first diagnosed I had 90 something percent  mutated chromosomes out of however many were possible and however many they test at a time (I’m sorry I don’t have more specific information in this regard, but I just don’t happen to know). As of the time of my test, I have 37%, which is excellent for this phase of the treatment.

However, as I also mentioned in my last post, my platelet count is still low, but not as low as I previously thought. Basically I bleed about as much as someone who takes aspirin everyday. I actually know this little factoid because I happened to be bleeding an amount which I felt was inordinate, but which my podiatrist convinced me otherwise per the above. Yes, it’s happened again: I’ve had an ingrown toe operated on once more. It’s not pleasant-sounding – in fact, if you’re not gagging already, I’ll have you know that it’s quite gross – so I won’t elaborate further.

Just kidding!  I had to leave directly from the podiatrists to go to work, reason being that the surgery was unexpected on my part…I suppose I could have told the doc to do it later, but forget that; I’m a man! Either that or an idiot…or are the terms synonymous? Damn man, I need to stop making jokes at me and my gender’s expense. Anyways, between driving, hobbling around and having low platelets, I bled right through the bandage, my sock, and even my shoe. I now have a noticeable red spot on my right shoe’s toe. I also have two giant bruises on my knee from rock climbing in the shlongunks…i mean shuangunks (gotta get that right) in New Paltz NY.

However, aside from the above blood related grossities, I’m doing great! Except now it’s 1:26am and I have to wake up tomorrow for work. Pssh! It’s all good…I’m an idiot! I mean a man.

The Big Day! …kind of

Well folks, the big day has come and gone (please refer to my last post), and it turns out to have been a big anti-climax.

First, I went to the podiatrist, and they DIDN’T operate on my toes, which I was expecting. For this I am very grateful, but NOT getting giant needles and construction grade wire-clippers stuck in and around your toes is far less dramatic than the opposite. Then, I go to the hospital to get my big cellular test…however three big things conspired to make this event less significant.

First, I was wrong, it was not a cellular test, but a genetic test, which actually makes sense. CML is caused by gene 9 and gene 22 getting messed up (no one knows why or how) and breaking apart, then fusing together to create a weird mutant gene that breeds cancer cells. So while I have no describable cancer cells in my blood, this test is checking to see how many CML genes there are, a.k.a the Philadelphia chromosome. At the onset of treatment, I had about 80% of my 9s and 22s fused into Philly chromes, and the bare minimum goal for one year of treatment is 30%…otherwise they’ll treat me differently. Not socially I imagine, but medically.

Second, I was wrong again; I haven’t been treated for six months; I’ve been treated for three. Whoopsie! An easy mistake. I don’t, like, keep track of time, or anything. Could be the fifth century B.C.E for all I know…if I even understood what “century” means.

Finally, the genetic testing takes two weeks to process, so major dud on dramatic information today. I did get my blood tested, and my whites are staying solid at 5.5, my reds are only slightly lower than normal, but my platelets are still very low. Oh well, I’ll have to be a bleeder for a little while longer. By the way, don’t you love how I waited until 300+ words into the post to get to the hard hitting facts? Made yall read that other nonsense!

In other news, I’ve been working on a new short cartoon. I won’t give anything away, but it’s called Embarrassing Moments For Frogs, and it should be done in a week or so.

A drawing of two frogs sitting on lilly pads. The girl frog on the right looks away, bored. The boy frog looks nervously towards the girl frog. There are red animation circles over their bodies.
Screen shot from Embarrassing Moments for Frogs

The red circles are just an animation tool; they won’t show up in the finished product.

On another completely unrelated note (to cartoons or leukemia), I have been taking care of my aunt Stacie’s cat Seth for the past week. My aunt was supposed to come back Sunday, and I’ve been going over her place every night, because Seth is on his last legs, and if no ones there he gets lonely and pissed off and, well, cat-like. So I headed over there around eight o’ clock this evening, unlock and open the door, and immediately smell smoke. Plus there’s a light on. Now, I figure my aunt came home early, which is often the case (my aunt smokes cigarettes for the record, and doesn’t set shit on fire to create the smoke, as some may have assumed). So I say hello, but no one answers. Wanting to make sure there wasn’t some random cig smoking, light turning on robber in the apartment, or worse yet, accidentally seeing my aunt naked, I stayed in the doorway and called her cell phone. It rang in the next room, and I asked if she was home. She said yes, so I knew she wasn’t lying…actually, I don’t know why I asked where she was, because obviously I knew, but it seemed like a good idea at the time. So anyway, I tell her I’m in the doorway, and she asks, “Which doorway?” I said, “The doorway to you’re apartment,” as if there was any good reason to call her if I was in any other doorway. (“Hello? Aunt Stacie? I’m in the doorway. Which doorway? The one to Pizza Hut. Bye.”) She says hold on and come out, fully clothed (thank God). She was just really tired and forgot to call me. But it makes for a damn good story, in my opinion! Love you aunt Stacie!

Alright, that about does it for me tonight. May you all have a happy and healthy whatever-day-you-read-this-on. Goodnight!

Tomorrow’s a big day

Welcome back to a brand new post, after a much begrudged absence (at least I assume it was begrudged).

Tomorrow, Monday August 17th, is, as the title of this post alluded to, a big day. The reason is that it is the day I go in for molecular testing to ascertain how my cells are responding to the treatment. I already have a complete hematological response, which means that the treatment has worked insofar as my blood is clean, so now they are going to test my cellular structures to see if those responded well. This is around the six month mark for treatment, so another big landmark.

Also, I have a toe doctor appointment tomorrow as well. So wish me luck! I have every confidence that things will go well, but extra luck never hurt. The actual procedure tomorrow should be a breeze, though; just a needle in the arm. Thinking about that would have made me nauseous six months ago, but after being made a human porcupine in the hospital, needles don’t bother me.

Well, “don’t” is a strong word, but I’ve certainly become more comfortable with them…or as comfortable as you can be around a sharp metal poky thing. Well alright folks, this is all for now. I’ll write more when I have more to write about! Namely tomorrow.

So until then, adios!

The Latest from the Greatest

Salutations from the hinterlands! Well, the New Jersey suburbs, really. I apologize for the lag in posts, however not much of note has happened. That is, until now.

So I had another CBC (which is a standard blood test, for those not intimately familiar with hospitals), and the results were excellent: my white blood cell count is still normal, and they stopped dropping (which is sometimes a problem…the medication can bring your whites BELOW normal), and my platelet count is coming up. It’s still below normal, but it’s coming up, and should be normal in a month or so. For a week or so, my platelet count was quite low, to the point where a few blood vessels burst in my feet, which looked like someone made a dot on my foot with a red magic marker. During that time I started growing a beard, as I didn’t want to cut myself shaving and not stop bleeding. However, I am glad to report that both my low platelet condition and the mangy scraggle that was forming around my face are both gone. All the other aspects of my blood test came back with flying colors, except my red blood cell count, which is still below normal. Yet it’s not that bad, and it should go up a little more before it evens out.

Also, on the dental front, I got my last braces adjustment the other day: on August 20th I will be brace-face-less! Incidentally, August 17th is the big test to determine how well the medication is working on the cellular level, so look out for that double-header. I think I mentioned in my last post that I had returned to work: this is true. I am again working at Bergen Community College as a writing tutor, and it is really slow. I literally sit there for 6 hours, and maybe have one appointment, if that. Luckily I do get paid for a decent amount of my time there, in part because I’m working on a brochure for the center to get extra hours.

Speaking of work, I got a gig building two websites for my friend Ted; one for him and his dad’s historical restoration business, and one for his solar panel installation business. It’s a lot of fun so far, and I’ll keep everyone updated on how it’s going, and of course provide links when they are done. And that’s all for now. I’ll be back soon!

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.

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.

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.

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!