Tested positive for COVID this morning 😞

My symptoms are mild (so far). Isolating and resting. Stay safe everyone.

Just got my COVID booster and flu shot 💉 💪

Can’t believe it’s been 10 years since my transplant. My deepest gratitude to family and friends who saw me through, and to my friends at Hackensack UMC who saved my life.


This new healthcare overhaul bill in the senate is already deeply unpopular, but for anyone still unconvinced, I’d like to add my own story to the mix.

Bluntly put, if the ACA (Obamacare) had not passed, my family and I would have been financially devastated.

I was diagnosed with leukemia in April of 2009 when I was 23 years old. Without getting into the gory details, my treatments were long, complex, and expensive. Treatments lasted over five years. A single months care bill was over $200,000.

Because of Obamacare, I was able to stay on my fathers insurance until I was able to get a job with health benefits. Without that provision I would have been uninsured, and would have had to pay full price.

Because of Obamacare, insurence providers could no longer deny be healthcare because of a preexisting condition. Without that provision, I almost certainly would have lost my healthcare or would have had to pay exorbitant premiums I could not afford.

This new bill would roll back this progress, and, according to the CBO, put 22 million Americans out of insurence.

This isn’t just politics, or fiscal policy, or one ideology versus another.

This is people’s lives. My life. Your life. All of us.

Healthcare isn’t a special interest; everyone deserves a chance. While we can’t erase death, at least we can prevent people from constantly worrying about it for them and their loved ones. Society functions better when we can focus on other things.

This is America. We are better than this.

Second Birthday

Well this news is already more than two weeks old, but here it is nonetheless!

January 19th, 2011 marked my one year anniversary (second birthday) of my transplant, and I got a pretty clean bill of health. Some of my blood counts are still a bit low (namely red blood cells, making me rather anemic – stairs still do me in), but that’s to be expected with the pills I’m taking. But otherwise, health is returning.

Because of this, the doctors have started cutting my meds. Since two weeks ago, I have completely weaned off prednisone! No more staying up all night (at least not on purpose)! No more random mood swings (and no comments from the peanut gallery)! No more shaky hands and blurry vision (unless I’m really scared and squint a lot)! So that’s exciting.

Also, in another month or so, if I’m still doing well, they will start cutting my photo more, and maybe within 3 to 6 months (hopefully closer to 3) I’ll be done. After that, they’ll take me off prograf, which is the immune suppressant, and once I’m off that I pretty much come off all the other meds I’m taking, as they are all just support antibiotics to fake having an immune system.

However right now there are some changes to the medications I take. First I am replacing folic acid with a multi-vitamin, and second I’m coming off Noxafil in three days! Noxafil is that nasty white stuff I have to take with every meal that tastes like acidic bubble gum. So anyhow, that’s all the news that fit to digitally encode. More soon!

Frog Dream

I would like to take this opportunity to transcribe a whacked out dream I had early this morning about frogs. It was very vivid and painful, as well as bizarre, and in my mind, amusing.

But enough foreplay, let’s get dreaming!

I was walking through a forested path in autumn, the leaves still on the trees for the most part, and wearing bright reds and golds. There was also a carpet of yellow leaves on the ground. I was walking with a girl who was my sister in the dream, but totally fictional otherwise (Sorry Laura, maybe next time my subconscious will give you the job).

I was walking brusquely, to where I don’t know, and the path became crowded with large frogs of green and brown hues. They were almost a foot long each, and sat perfectly still in various positions on the path, but always in profile. However, what was really unique about them was that each had seven legs; two in the front and an extra five in the back making a sort of star shape, the fifth leg sprouting unceremoniously from the frog’s asses.

The frogs were large and plentiful and kind of disturbing, so I hurried through them when all of a sudden I felt a clenching pain in my ass crack: one of the frogs had leapt up into my butt and was now pinching me with what I could only imagine were spiked webbed feet (Since this was my dream, whatever I imagined must have been true). I started to run, bowlegged, and pried desperately at the frog keeping my ass hostage. Yet the frog held tight, and I couldn’t pry him loose.

My dream sister had disappeared by this point.

Finally, after much more struggling, I managed to dislodge the frog from my ass, but now it was stuck to my hand, so my attempts to fling it away were useless. After a minute or so of more running and hand shaking, I grabbed the frogs legs, of which there was now a normal amount, probably because I had forgotten about the extra with all the pressing butt pain, and twanged it away like a slingshot, making sure the limbs had no chance to come in contact with my flesh.

After disposing of the offending frog, I realized that my butt still hurt, and that there was still another frog stuck up there. I reached in and pried that one out much the same way I had the first, but when I tried to fling it away in splintered into five or six smaller frogs that shot upward only a few feet from my current position so that I ran smack into their falling, grabbing webbed toes.

I did manage to miss about half the frogs, but around three stuck to me and immediately started pinching. I had ripped off one on my arm and was going for another on my leg when a third on my back quickly migrated back to my ass, and set up shop clenching again.

I was just about to freak out about what this much smaller frog might be able to do up there when I woke up, realizing that there had been an uncomfortably rough piece of cloth stuck up my butt the whole time.

Cutting all sorts of things (all of them good)

Well hello again folks!

Once again I have been a bad blogger and neglected this one for quite some time, so consider this post both my apology and my attempt at rectification. There have been several recent health developments worth mentioning.

First of all, my internal organs are looking good, my liver being the one exception, which is still looking a hell of a lot better than it did before, just a tad under a normal person’s (if that normal person hadn’t been drinking heavily for the past 10 years, which is a significant improvement for me!).

Since my numbers were looking so sexy (much like a super model with a slight limp), the doctors have cut my prednisone from 20 mg every other day to 10 mg every other day. The less steroids the better, is my motto, so I’m very excited to have this fulfilled in reality. In another few weeks I’ll be up for review again (kind of like getting your PhD, but with less papers and more tests) and if I’m still doing good they will either cut my prednisone down to 5 mg every other day, or eliminate it entirely.

In addition, my photophresis schedule has been cut down as well, going from twice every week to twice every two weeks. This has been my first week without photo, or any trip to the clinic for that matter, since May. Once I’m completely off the prednisone, and still doing well, they can start taking down my photo even more to twice every three weeks, to twice a month, and finally to graduation (diploma not included).

Then, once I’m off photo, and still doing well, they can start taking me off prograf, the immuno suppressant, and once I start coming off that I also start to come off every other pill I take, as they are all countering drugs for the side effects of prograf (read: not having an immune system). So I’m looking forward to that. Otherwise I feel good, and I have lots of energy. Stairs still kick my ass, leaving me panting like a dog in heat or a transplant patient who just climbed stairs, but it’s getting better.


In other news, I finished day one of NaNoWriMo, or National Novel Writing Month. In this month, participants try to write a full novel (at least 50,000 words) in the month of November (for those of you who don’t remember their nursery songs, that’s 30 days). I have successfully written at least 1,664 words today, as per my goal (50,000 / 30). Check the newly added NaNoWriMo widget in the sidebar for updates, or you can visit my profile here.

Good News!

Good news folks, my health has improved in the decade since my last post! Well, decade is a bit of exaggeration, but it has been a while.

I have been out of the hospital for several months now, and have not had to go back in. I have been going to photophoresis outpatient four times a week to get my billirueben under control, and it’s been working.

Currently, my billirueben is hovering around 0.8, which is in the normal range (optimal is 0, but I’m not complaining). Also, I have been steadily coming down off the prednisone, from 120mg a day at the start, to 30mg every other day now. I have a doctor’s appointment this coming Wednesday, and if I’m still doing good, they will cut my prednisone even more.

Speaking of cutting, as of last week I have been cut back to three photophoresis sessions a week, with a possible cut to two this Wednesday. I have also cut back on prograf, the immune suppressant that prevents against GVHD, and I’ve entirely cut a liver drug, meaning said organ is doing pretty dandy.

Finally, pending one final test, I’ve been given the OK to work again! I can only work part time, since I’ll still have to go to photophoresis two or three times a week, but it’s still exciting. I plan on getting my Bergen English Tutor job back until I can work full time, or until something better comes along.

Last but not least, I just signed up today for a sketch comedy writing class at the UCB Theatre in New York, which starts September 19th.

Oh, and I have hair again. That’s pretty cool.

Just got my in grown toenail (#7…I know it’s gross) operated on! Wasn’t that bad.

Original post: <twitter.com/chrisjohn…>


I’m out! Through cunning, misdirection, careful planning, bribes, an elaborate disguise kit, and the permission of my doctor, I was sprang from the hospital this past Wednesday.

It kind of looked like this:

So my billirueben is down around the 3s and 4s; it does move around a bit, but the trend it down, and fluctuations are to be expected. I have lost most of my prednisone swelling, although my face is still noticebly jowley. I feel great, albeit anemic, as I am (a combination of the prednisone and the photophoresis – a condition that will aleviate as soon as I’m weened off). I do the photophoresis four times a week in out paitent right now, a process of about four hours, and will continue to do so for the month of June, at which point I will have an assessment and most likely a reduction in visits. With any luck, I will be weened off, or greatly reduced the amount of prednisone I take.

Aside from that, my life has become less restrictive! I am far enough away from transplant that I can go out and do things – obviously being careful, especially around sick folks – and even go out to resturants! (nothing dirty, no salads) I am, however, very sensitive to the sun as a result of the photophoresis treatment, and must wear sunblock, longsleeves, wrap around sunglasses and a hat while outside, in addition to sticking to the shade as much as possible. Yet I find this a perfectly accetable price in exchange for health and freedom. I also have my grandfather’s sweet fedora, a tiger winter hat I got from my sister, and sleek sunglasses, so I feel confident that this new “restriction” is only a cleverly disguised ploy on the part of the universe to make look like a badass.


Well, I’ve been in the hospital for two and a half weeks, and my billirueben has been steadily going down. It did go up twice, but then continued to go down.

Over the weekend, my doctor switched me to oral steroids, as apposed to the more potent IV steroids for which I was hospitalized to recieve, to see how I did on them. My billirueben did go down, or stayed the same, so that was good.

So, yesterday, my doctor told me that if my billiruben went down again today, I’d get to go home. I got my billirueben back today, and it did go down, but only a 10th of a point, which is within the margin of error.

All the nurses seem to think I will go home,  but I know my doctor is very concervative about sending people home, as she understandablely doesn’t want them to just have to come right back to the hospital. So now I wait to see the doctor, and see what she says.

More updates to come.

Big and Fat

Today is Wednesday May 26th, the fifth day of my latest stint in the hospital. I’ve been getting the photophoreisis every morning since Monday, and it’s been going well.

The procedure itself is pretty boring; the nurse just pops in an IV and you have to lay down for 3 to 4 hours, and not move your right arm much. It’s painless, and I often sleep. From all accounts, the process is effective, however it does work slowly. My billireuben counts have only been going down slightly each day, and today they actually went up, from 6.8 to 7.2. This, apparently, is normal, and just part of the healing process.

Also, I have new information to clarify my last post, where I said that the photophoreisis worked “by magic”: this is the common medical opinion. I am serious; doctors have literally no idea why or how it works. They just discovered a bunch of people with skin conditions eating a particular plant near the nile, getting exposed to the sun, and getting better. They then extrapolated those conditions for other uses, but still have no idea how it does what it does. Kind of weird, kind of scary, and kind of cool. You be the judge.

However, the big thing that is really effecting me side effect wise is water weight from the prednisone. As I’ve mentioned before, one of prednisone’s (many) side effects is the catastrophic retention of water, of which I am effected. Unfortunately, I have only gotten bigger, now sporting at least 20 lbs of excess water weight, putting my weight at 145 lbs (my personal record, far and away). Now, many may think, “Chris is a stick! A sickly stick. Stickly, you might say. 145 lbs is a healthy weight.” To which I reply, “Yes, it very well might be, but only if it’s real.” As it stands, lugging around a ton of water in your thighs, stomach, face and feet is highly uncomfortable. It also makes my penis look like Jabba The Hutt, which is scary enough in and of itself, but now everytime I pee I hear him laughing.

And on that image I leave you!

I’m Not Home!

Well I’m going back into the hospital!

Turns out the oral prednisone I was taking at home didn’t really work the way the IV drip prednisone did, so my billireuben went up. I was actually supposed be admitted today, but the room is still not ready as of 8:00pm (and probably won’t be until 11:00 or 12:00), so I’m just going to go in first thing tomorrow morning.

They will be doing another procedure on top of the prednisone that is apparently very effective called photophoriesis. What will happen is they will hook me up to this machine through an IV, and filter out a small amount of my white blood cells, then put the rest back in me. Then they radiate those white blood cells, pump them back into my body, and then hit them with artificial UV sunlight, seemingly for no logical reason.

However, apparently this process reverses GVHD by damaging the T-cells that cause the GVHD, and not the ones that fight it. My only guess on the science of this is that it must be heavily based in voodoo.

Anyways, they will start me on this on monday, and continue for 3 or 4 days, depending on how well I respond, at which point I could be discharged. Hopefully I’ll only be in the big house for a week, maybe less.

Also, the photophoreisis should help me get off the prednisone quicker.

After I’m discharged, I will still need to go to outpaitent for photophoreisis probably at least 3 times a week, and slowly decrease. Chances are I’ll be doing this for at least a month, and I’ll probably still be on some dosage of prednisone after that. So that’s the update for now, other than I had really good indian food today.

More when I don’t have to pee as bad.

I'm Not Home!

Well I’m going back into the hospital! Turns out the oral prednisone I was taking at home didn’t really work the way the IV drip prednisone did, so my billireuben went up. I was actually supposed be admitted today, but the room is still not ready as of 8:00pm (and probably won’t be until 11:00 or 12:00), so I’m just going to go in first thing tomorrow morning. They will be doing another procedure on top of the prednisone that is apparently very effective called photophoriesis. What will happen is they will hook me up to this machine through an IV, and filter out a small amount of my white blood cells, then put the rest back in me. Then they radiate those white blood cells, pump them back into my body, and then hit them with artificial UV sunlight, seemingly for no logical reason. However, apparently this process reverses GVHD by damaging the T-cells that cause the GVHD, and not the ones that fight it. My only guess on the science of this is that it must be heavily based in voodoo. Anyways, they will start me on this on monday, and continue for 3 or 4 days, depending on how well I respond, at which point I could be discharged. Hopefully I’ll only be in the big house for a week, maybe less. Also, the photophoreisis should help me get off the prednisone quicker. After I’m discharged, I will still need to go to outpaitent for photophoreisis probably at least 3 times a week, and slowly decrease. Chances are I’ll be doing this for at least a month, and I’ll probably still be on some dosage of prednisone after that. So that’s the update for now, other than I had really good indian food today. More when I don’t have to pee as bad.

I’m Home!

Finally, after a week of siting around in the hospital, and waiting around all day today, I was discharged from the hospital!

Thanks to my Aunt Terry for hanging out with me all day and driving me home. Just a quick update:

My liver functions are steadily returning to normal on the prednisone (steroids), and while I’m still under close observations, things are getting better (including my color). There are some side effects; first, this particular steroid weakens muscles, especially in the legs, so I have to do a lot more exercise just to keep them at the level they were. Also, the meds jack up my blood sugar, so currently I am on a diabetic regiment. I do the finger sticks (blood sugar checks) before each meal – I have been averaging about 350 – and then inject myself with insulin (usually10 units).

This may seem freaky to some, but the needles are small and really painless, and you feel really badass doing it. My dad was a real big help today and got all my prescriptions, except unfortunately the doctor neglected to write a prescription for one of the meds (a nasty powder stuff), so I’ll have to go get that in the morning. Finally, the prednisone has the side effect of keeping you awake, hence this blog post at 2:00am! I did have sleeping pills in the hospital, but the doctor didn’t write the prescription for that either, so for at least tonight I’ll have to wing it.

Finally, congradulations to my mom on graduating graduate school! She also got the top honor in the psyche department for having the highest GPA (no surprise there). This is all well and good, however it may force me to go to grad school to beat her. Alright, well that’s enough for now. Goodnight! (hopefully)

Some Good News and Some Bad News

Hello everyone! Sorry that it has been so incredibly long since my last post, however in my defense, there wasn’t anything that juicy to report. Now, finally, there’s some drama!

For anyone who doesn’t know the circumstances of my medical treatment since my last post, here they are in abbreviated form.

My blood counts continued to go up, although with plenty of hills and valleys, instead of a straight climb. Three weeks ago I had my (hopefully) last bone marrow biopsy, and let me be the first to say, even though it was my fourth, they don’t get any easier. Needless to say I’m glad that’s over with. During the past say five weeks, there have been graft vs host “scares.” Now I say scares in quotes because having a little graft vs host, as mentioned previously in this blog, is a good thing, as my sister’s cells take care of any strangling cancer cells. It also quickly increases the percentage of the cells in my body that are my sisters, a.k.a. mine are getting killed. It seems sibling rivalry can be traced all the way down to the cellular level. These graft vs host (or GVHD) episodes never really amounted to anything, as there wasn’t enough of a presence to even confirm diagnosis, much less administer treatment.

Aside from some stomach discomfort, I was feeling good, and since my blood numbers were good, I was given a pass to start going out more about a week ago. This was roughly 105 days after transplant. My conditions for going out were strict; I had to wear lots of sunblock, avoid sunlight, wash my hands almost constantly, and stay away from large crowds and coughing people in addition to putzes, although in all fairness, that last restriction was self imposed. I used my new found freedom three times during the past week; once to visit my friend Cat at her new apartment on 171st street, once to visit my friends Zach, Beth and Nick at Sarah Lawrence College in Bronxville, and once to visit my family for mother’s day (Thanks for feeding me guys! It was delicious).

This brings us up to the present day, so without further adiue, here’s the news: The good news is that the full test results came back from my bone marrow biopsy, and I am cancer free! There are no cancer cells in my blood or my bone marrow, and my cytogenetics (which measure if there are any of the original mutant chromosomes that caused the leukemia in the first place), and they showed a normal female. Next stop, estrogen central; I’m going to start caring about shoes.

Now the bad news is, that it has finally been confirmed that I do have GVHD of the liver, and I’ve been admitted to the hospital for treatment. There is a giant fight in my liver between my sister and I, so my liver is not functioning well. Essentially it is not processing and eliminating the toxins in my body, of which there is an extensive amount. I am currently such a bright shade of yellow, I could join the cast of The Simpsons. My Billireuben is very high (a bi product of the liver), which is why I need to be admitted for treatment. The treatment process involves steroids (Not the muscle building kind, I asked), which I will probably be on for a month or so total, including both time spent in the hospital and once I’m sent home. The steroids I will be taking – and have actually started taking already – are a much more potent version of Prednisone.

Well, that’s all the news that’s fit to print, other than I also had time to grow a sweet beard, which combined with my bald head, makes me look like a badass.

I am cancer free! On the flip side, I’m back in the hospital for Graft vs Host of the liver.

Original post: <twitter.com/chrisjohn…>

Yay, bone marrow’s done! On the other hand I probably have GVHD and am getting a colonoscopy tomorrow. I’m also 67% Laura.

Original post: <twitter.com/chrisjohn…>

Hypnotic Toast and tales

Before I get into the leukemia update portion of this post, I would like to announce the launch of my website, www.hypnotictoast.com! It collects all my digitizable work to date, and will be a major platform for new work. Check it out! Edit: This site is no longer online.

There have been several episodes related to my leukemia since the last time I posted, however the current effect is zero sum: I’m still going good, my counts are going up, and I feel better. Specifically, my platelets, which had been dropping for a week, shot up to 87 thousand parts per million, which is safely out of the critical range. Also, my red blood cells and hemoglobin have been steadily creeping upwards, although my white blood cells did drop to 1 thousand (where the low normal is 4 thousand). However, the doctors aren’t concerned, as it’s expected that the blood counts will hop around a bit.

A few weeks ago, I was complaining of nausea and stomach cramps, which the doctors thought was gut GVHD, and if there was enough of it there, they would immediately treat me with steroids (Prednisone). So they did an endoscopy, which for those who are not familiar is when they take a giant hose and stick in down your throat, and take samples of your stomach lining. I was pretty freaked out by the concept, but it turned out that they knock you out for the procedure, and I literally remember nothing. It was like that half hour didn’t happen. For me, it seemed that as soon as I closed my eyes I started waking up, and I thought I was coming out of it too soon. Then I opened my eyes and saw I was in a different room, and judging from the amount of drool on my pillow, had been there for a while. Later, I saw an episode of House where they perform and endoscopy, and though the girl was knocked out, she kept making gagging noises during the operation. I kind of hope that just Hollywood, but I have a sneaking suspicion it’s accurate. For some reason, it’s fine to think that people stuck a tube down my throat which I have no memory of, but if I was making gagging noises? Totally creepy.

Yet I digress. When the results of the endoscopy came back, there wasn’t enough evidence to make a case for gut GVHD, so I dodged the Prednisone. It is almost definite that I do have some GVHD, but it’s very mild, and as I’ve said before, a little bit of GVHD is quite good. One statistic said that people are something like 50% less likely to have a remission if they have had GVHD in some form. In other news, I’ve been exercising much more; every day for one hour or more, plus walks (It’s so beautiful!). Thanks to Uncle Jim and Aunt Mary for the Thera-Bands, they really get the job done!  And that’s all there is. Catch you all on the slip slide.

Catching up with transplant boy pt. 2

Well, it’s taken me a few days longer to come up with the second part of catching up with transplant boy, but the Olympics were on! Man, that final hockey game was so amazing, I may just start following the sport.

Right, so in the last part’s thrilling cliffhanger, I was about to be admitted to the hospital for the transplant procedure. The first part of my stay was pretty boring; they hooked me up to my IV pole (which I stayed connected to at all times) and I hung out for a few days. My room was nice for a hospital, but small. The ward, 8th floor Pavilion East, contained around twenty rooms – all transplant patients – surrounding a large nurses station. The entire ward’s air was filtered and pressurized, and they kept the humidity at 17% to prevent against any sort of bacteria, but it was brutally dry. Even though I drank lots of fluids, and was constantly on a hydration drip, my lips and hands still cracked up. A&D ointment was used liberally.

Throughout my time there, lots of friends and family came to visit, which was very nice; otherwise the days just sort of blended together. After a few days of hanging out, they started me on high-dose chemo through IV. I thought I’d start puking immediately, or have some other violent reaction, but nothing happened. For four days they loaded me up with chemo, and I felt no adverse side effects. They encouraged me to exorcise, so I would walk three miles around the nurses station a day to keep my muscles moving. A few days after the chemo, I started to feel tired, but not debilitatingly so, and kept up my exorcise.

Having been chemoed enough, I was given two days rest, then on January 19 I the transplant, and let me tell you it was one giant anti-climax. Like the ending of Monty Python and the Holy Grail but less hilarious. They just took a bag of stem cells, hooked it up to my IV, and let it drip in. That was it. My sister had actually donated the cells that same day in the same wing of the hospital three floors down, and while I actually never got to see her, I felt the connection. For her to donate, she actually had to get a catheter as well (in her hip) because her veins were too small. Then they yanked her blood, spun it around the room in lots of different tubes, extracted the stem cells, the funneled the rest of her blood back into her. At least, this is what I hear. She did great, made friends with all the nurses, and after two days took a train back to Vermont and was working the next day. Ah, to be 18 again….or 23 without cancer, which is what this transplant aspires to achieve, so I’ll just go ahead and make plans to do something physically challenging in a year.

After the transplant, things remained the same until about a week and a half later. Then, the side effects hit. I got sores in my mouth and throat, and my mouth was constantly overflowing with watery phlegm. Revolting, I know. I entered a solid week where I did not eat, and was fairly dead to the world. I only got out of bed to go to the bathroom. It was one of the more miserable times in my life. Also, I could not sleep due to the pain, and the doctors wanted me to rest, so they hit me up with pain meds. First they had me on Oxycontin, the drug that Rush Limbaugh was famously addicted to, and when I asked for something stronger, they gave me morphine, straight into the IV. Now, I appreciate them taking out the big guns, but I would have thought there was some sort of gradation between pain pill and morphine. Finally the side effects subsided, and I got better and better until I was only marginally phlegmmy and had got rid of most of the throat sores.

On February 2nd I left the hospital, and came home, and after a week or so my mouth sores were gone completely, as was the snot. At first I was so tired I could hardly do anything, and my mom, who had brought me home cooked food almost every day in the hospital, continued to take care of me at home. After another week or so, I was strong enough to start doing some things by myself, but it’s still nice to have someone else cook for you all the time 🙂

So now it’s been about a month since the transplant. I’ve been going to the doctor’s twice a week to get my blood checked (so far so good), but otherwise I can’t really leave the house. My immune system is that of an infant’s, apparently, so I can only eat well cooked food, and I can’t be around sick people or people who have children in school. However, after 100 days, April 29th, I will be re-evaluated, and if everything looks good (which I’m confident it will at this rate) Restrictions will be lifted. I’ll have have to be careful and pace myself, but I will be able to re-enter society. We’ll see when I’ll be able to work again, which could be up to a year or more. Until then, luckily I got Social Security Disability (And at 23! Getting my payout young). That’s about it so far; I’ll update more frequently now!

Catching up with transplant boy pt. 1

Welcome one and all, to another long overdue post! A lot has happened since I said I was going to get a transplant, namely the transplant, but I’ll try to summarize as best I can the last two months. And by summarize I mean talk about in excruciating detail.

The first step of the process was to go into the hospital as an out patient to get rid of a trace amount of the epstein-barr virus I had hanging around in my blood. Epstein-barr is the virus that causes mono, which I never had but had to have been exposed to as a kid. My body kept it under control (it was only a trace), but after transplant, once I had no immune system to speak of, the virus would cause some problems. So they hooked me up to a chemo IV and blasted it out of me. Fortunately, this chemo is a “mild” variety, and I suffered no side effects.

The next step happened on January 11th, the day before I was admitted, which was to implant a catheter. At first I was terrified because, much like you, I thought all catheters had something to do with pee, thinking they would perform some kavorkian crotch surgery on me. Thankfully, this was not a pee catheter; mine was a small tube attached to a plastic plate that they stuck in my shoulder. When I went in for surgery I had decided to be comfortable, so I went commando.

This would have been a great idea, except that they make you change into a hospital gown, a devilishly forseeable practice I failed to make note of. The nurse hands me this gown, which thankfully has two parts – one for the front, one for the back – and tells me to strip down to my underwear. After I was wheeled through the hospital in a wheel chair, which was one of the breeziest experiances of my life.

Inside the operating room was white and blindingly lit, with strange white machines lining the walls, and then empty floor throughout the rest of the large chamber save for the lonely looking operating table in the center. I get on the table, which was bearly wide enough to contain me, and I’m roughly the width of a pipe cleaner, and then they had me hike up my gown dangerously high, strapped my arm  to a small extending platform, shone a light in my face, called over the anesthesiologist while shaving the right side of my chest and told me to relax.

The anesthesiologist grabbed my hand and told me in no uncertain terms not to move. Then he stabbed me with a needle. He did that once more, and the next thing I remember the room is fuzzy and the doctor is telling me that everything’s over and the opperation was a success. I looked at the implant; it was yellow and wedge-shaped, about the size of a shot glass, and had three color coded tubes sprouting from the base. Right then, I felt like a cyborg. Also, I felt that after being knocked out for over a half an hour, and being so precariously clothed, that every nurse in that room saw my nads.

Well, this post is longer than I expected; and I expected it to be pretty darn long. Considering how much I have yet to tell, I’m going to split this into a few parts. The next part will be up tomorrow. See you then!

Getting a Transplant

I apologize for not posting for a while, but I’ve been busy, and busy equals news, so here it is: I am going to get the stem cell transplant. In fact, I’m being admitted into the hospital today (January 12th, 2010).

The reason I need the transplant, as I’ve outlined somewhat previously, is that Gleevec did not fully work, in that it put the leukemia into remission, but also knocked the crap out of my blood counts. I had been taking homeopathic remedies, which raised my blood counts significantly. My last counts were relatively good: platelets 38, whites 4.12, and hemoglobin normal (all counts in thousand parts per million). However, the number of Philadelphia chromosomes also came up, as one might imagine they would after not being treated.

After the last check, 75% of the batches checked displayed the mutation. All that mumbo jumbo is to say that I’m doing the transplant, and it’s going to go great. I’m young, otherwise healthy, my sister is young and healthy and a perfect match, and I’ve got the best support anyone could ask for (and lots that anyone couldn’t). I have already gotten a catheter placement, which is actually placed in my chest near my right shoulder, for those of you who thought it was placed in my junk. This is just a set of three tubes (sticking out of my chest like some broken cyborg) that allow the doctors to draw blood and give chemo without injections. This will be nice, because I’ll be having a lot of blood and chemo.

I start high-dose chemo tomorrow, and will continue with that until the 19th, when I get the transplant. After that, I wait for the stem cells to grow into bone marrow, and then I go home. I’ll be quarantined to my house for at least three months while my immune system recovers, and during that time I have to be really careful about germs; if I get sick, it’s bad news, being that my only immune system to speak of will be antibiotics. After about 6 months I’ll be able to return to non-strenuous work, and I’ll be off immunosuppressants in around a year, and medication entirely in two.

In the mean time, people can come visit so long as they are not sick, and are not around people who are sick, and they come in small numbers. I may lose some/all my hair, so don’t be surprised if I’m a cue-ball. I’ll keep y’all posted, but that’s all the news that’s fit to print.

Until there’s more, have a pleasant tomorrow!

Transplants on the theoretical horizon

It certainly has been a while since my last post, and for all those fiending for new material, I apologize.

Some wild stuff has been going down in my life, and I been swept around, this way and that, and didn’t have the strength of will to sit down and write another post until my mind had settled somewhat. And so, without further ado, here’s that whirlwind.

Medically, platelets have been big; namely their absence from my bloodstream. I’ve noted before this lack, which has been going on since late August, however these numbers never rebounded. My doctor told me maybe a month ago that he didn’t know why they weren’t coming back after such a long period, and that this was highly unusual, which made me feel special. I can’t really go back on Gleevec because then my platelet levels will completely evaporate, so the only other medical recourse is the bone marrow transplant, which I’ve been trying my best to avoid.

The reason I’m trying to avoid it is that it puts me in the hospital for a month, and then I’ll be out of work for 6 months to a year. This would give me plenty of time to start writing that novel, but I had been hoping to move into the city soon.

Speaking of which, that is another development. My friend Dave needs a roommate, and I applied for a webmaster position at the New York Film Academy, where he and my friends Andy, Meg and Jon work as well, and if I go for the transplant, I obviously can’t take the job if I get it.

So not wanting all those bone marrow high jinks, I decided to go to a homeopathic doctor who had apparently given my mom medicine to jumpstart her fertility for both Laura and I (more information than I really wanted to know), and helped Laura overcome Lime disease. He turned out to be this really nice Indian man who gave me this herbal formula, and what do you know, my platelet levels came up! They had been hovering around the high single digits, but after two weeks on the formula, raised up to 20 thousand parts per million, high enough that I didn’t need a transfusion on my past visit.

This was certainly celebration worthy, however in addition to my platelet levels rising, so did my cancer cells, putting me back in the bone marrow predicament. I’m going to the transplant doctor today, and she’ll give me the skinny on what the whole procedure will entail, and then it will be in my hands to make the decision. I’ll keep yall posted on what develops.

Until then, adios!

Transfusions are spooky?

This past Thursday I went into the doctor’s office to get my weekly blood test; the numbers revealed that my bone marrow had yet to bounce back, and that my platelet level in particular was even lower than last time, being 5 thousand parts per million where the low normal is 130 thousand parts per million.

So Thursday was another transfusion day. This time they gave me two units of platelets, and one unit of blood, along with benadryl, tylonal, and one other that I’m forgetting, to help my body accept the new material. However, the big side effect of benadryl is that it knocks you out.  I was at the doctor’s for a total of seven hours that day, from 9am to 4pm, and after the first three in the waiting room (waiting for the platelets and blood to be ready; I understand that these things take time, but sometimes I wonder if they actually have to go get a downer, get his blood, and filter it after they learn they need the stuff), I slept like a baby. Well, a drugged baby, but a baby nonetheless.

Now I feel good; I’ve gotten my blood counts lifted out of the basement, and I’m confident that in another week or so my bone marrow will kick in (next week will make it three weeks since I’ve been off Gleevec). One thing I’ve learned from this most recent experience: blood is warmer than platelets. When platelets go into you, your arm feels icy cold, but when blood goes in, it feels nice and warm, like the heat from a comfortably crackling fire, except that the heat comes from within your body instead of without. I would know, I had ’em back to back.

And that’s all for now. Happy Halloween! Oh, wow, this is a post on Halloween, isn’t it? Custom dictates that anything being remotely affiliated with the holiday should be somehow spooky…and to answer the question posed by the title of this post, no; no they are not. To remedy this situation, here’s a REAL LIFE ghost story.

Once upon a time, when I was young (that makes me sound so old!), I woke up. Then I got out of bed, but didn’t make it, and went downstairs. When I came back up, the bed was made perfectly; my dad was at work, and my mother had been with me the whole time! Whoooooo! My sister was there, but knowing her, the last thing she would do is make a bed, much less mine. Or maybe she wasn’t born yet, I don’t remember. Spooky! A scary old house cleaning ghost! Oooh!


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.